Meet our volunteers

Atlanta Chapter

Erin Burden

Erin Burden

Atlanta Chapter Coordinator

I first learned of PKD when my daughter was diagnosed with the disease in utero. I quickly became involved with the Connecticut Chapter after she was born in 2010 by supporting the annual Walk through media relations outreach. My family and I then moved down south where I now serve as Coordinator of the Atlanta Chapter and support efforts to find treatments and a cure for PKD!
I’m a: New Coordinator
I need help with: Participant engagement
I think I am really good at: Participant engagement and getting volunteers
Contact Erin: atlantachapter@pkdcure.org

Elizabeth Tuttle

Elizabeth Tuttle

Atlanta Walk Coordinator

I have been the Atlanta Walk Coordinator for 4 years and find volunteering my time to the PKD Foundation as a way to give back for the amazing care/treatment my mom received during her journey with PKD.
Contact Elizabeth: atlantawalk@pkdcure.org

 

Baltimore Chapter

Matt Mainolfi

Matt Mainolfi

Baltimore Chapter Coordinator

PKD has been a big part of my life for many years. As the Chapter Coordinator of the Baltimore area, I do what I can to bring awareness to the disease that affects my wife and my son. As long as PKD exists, I will support the Foundation to find a treatment and hopefully a cure.
Contact Matt: baltimorechapter@pkdcure.org

Carol Mainolfi

Carol Mainolfi

Baltimore Walk Coordinator

I volunteer with the Foundation to share my experiences as a transplant patient and parent of PKD. By working as a walk coordinator I am able to help spread awareness about this life-threatening disease and help raise funds for further research. Together we can unite to fight PKD!
I’m a: Veteran Coordinator
I need help with: Growing my Walk and recruiting volunteers
I think I am really good at: Organizing everything for the day of the event
I want to connect with fellow Coordinators about: Growing my Walk
Contact Carol: baltimorewalk@pkdcure.org

Central Florida Chapter

Brittnee Boyd

Brittnee Boyd

Central Florida Education Coordinator

My name is Brittnee Boyd and I am 20 years old. I was diagnosed with PKD in 2009 when I was 12 years old. I love being able to serve as a volunteer for the PKD Foundation and help as many people as possible!
I’m a: New Coordinator
I need help with: Participant engagement and growing my Chapter
I want to connect with a fellow coordinator about: What kind of educational meetings they have had.

Contact Brittnee: centralfloridaeducation@pkdcure.org

Stephanie Smetana

Stephanie Smetana

Central Florida Walk Coordinator

I chose to volunteer with the Central Florida Walk for PKD because my mom, sister, and I have PKD. I have lost eight relatives to PKD. By volunteering, I am stepping forward for a better future for my son while supporting other families that have PKD. I encourage you to please join me as we unite to fight PKD!
I’m a: Veteran Coordinator
I need help with: Participant engagement, growing my Walk, recruiting volunteers and sponsorship

Contact Stephanie: centralfloridawalk@pkdcure.org

Central Ohio Chapter

Mandy Trail

Mandy Trail

Central Ohio Chapter Coordinator

Marlene Yeldell

Marlene Yeldell

Central Ohio Walk Coordinator

I’m a: Veteran Coordinator
I need help with: Participant engagement and growing my Walk
I want to connect with a fellow coordinator about: Increasing Walk participation
Contact Marlene: centralohiowalk@pkdcure.org

Charleston Chapter

Sean O. Williams, IV

Sean O. Williams, IV

Charleston Chapter Coordinator

Kate and I entered the world of PKD 7 years ago when our son and Kate were diagnosed just before his birth. We are thankful for the support of our friends and family as well as our extended family in the PKD community. We’ve recognized how important this support is and this is why we are trying to give back to the community in the Charleston area. We are always looking to connect with the people affected by PKD and their families. We look forward to our November walk as a chance to get together and celebrate.
Contact Sean: charlestonchapter@pkdcure.org

Kate Williams

Kate Williams

Charleston Walk Coordinator

I’m Kate Williams. I am a second grade teacher, ballroom dance enthusiast, wife, mom of two boys, and a PKD patient and parent. Both my son, Owen, and I were diagnosed with PKD in 2011, and we participated in our first Walk for PKD that same year. Since then, the PKD Foundation has been a constant source of support and hope for our family. I became the Charleston walk coordinator in 2013. Our family is passionate about finding a treatment and cure for this disease. Together, we can end PKD!
I’m a: Veteran Coordinator
I need help with: Growing my Walk and recruiting volunteers
I think I am really good at: Participant engagement, organization, and getting donations for day of Walk needs
I want to connect with fellow Coordinators about: Growing a base of consistent volunteers
Contact Kate: charlestonwalk@pkdcure.org

Charlotte Chapter

JoAnn Villanueva

JoAnn Villanueva

Charlotte Chapter Coordinator

Working to spread the word about PKD and how it affects so many families are my goals. My ancestors lost their battle with PKD. I am committed to helping future generations of my family conquer PKD. A treatment would be a blessing. Ultimately a CURE is my dream!
I’m a: Veteran Coordinator
Contact JoAnn: charlottechapter@pkdcure.org

Genae Randall

Genae Randall

Charlotte Walk Coordinator

PKD has affected my family for generations. Watching loved ones struggle with such an awful disease that so few have actually heard of lit a fire inside of me and led me to volunteer with my local PKD chapter in Charlotte, North Carolina. I am involved to help spread the word and raise awareness about PKD, to help raise money for research and treatment, and ultimately to fight for a cure.
Contact Genae: charlottewalk@pkdcure.org

Chicago Chapter

Marla Snyder

Marla Snyder

Chicago Chapter Coordinator

PKD has shown its face in my family history. My involvement with the PKD Foundation has shown me the importance of being proactive with nutrition, research and fundraising. Please partner with our family and fight for PKD patients and their families.
I’m a: Veteran Coordinator
I need help with: Participant engagement
I think I am really good at: Talking one-on-one with individuals and families
I want to connect with a fellow coordinator about: an event I am hosting in October
Contact Marla: chicagochapter@pkdcure.org

Cincinnati-Dayton Chapter

Sharon Fritz

Sharon Fritz

Cincinnati-Dayton Chapter Coordinator

I have been an active member of this Chapter for approximately 10 years, more recently accepting the position as Chapter Coordinator. I have a strong belief that through collaboration, encouragement and education, we can support all those affected by this disease and raise the necessary funds to continue the fight for treatments and a cure through research! There is so much hope for the future!
I’m a: New Coordinator
I need help with: Recruiting volunteers
I want to connect with fellow Coordinators about: Finding interesting education activities
Contact Sharon: cincinnatidaytonchapter@pkdcure.org

Emily Cohen

Emily Cohen

Cincinnati-Dayton Walk Coordinator

I have been a volunteer with the Foundation for as long as I can remember. My mom and several relatives had/have PKD. I love sharing my experience as a kidney donor to my sister, Este, last year. I’ve worked with many wonderful volunteers in the Dayton & Cincinnati area over the years and thought it was my turn to step up as coordinator. Let’s all spread awareness about this life-threatening disease and help raise funds for further research!
I’m a: New Coordinator
I need help with: Growing my Walk
I think I am really good at: Promoting living organ donation
I want to connect with fellow Coordinators about: Growing my Walk
Contact Emily: cincinnatidaytonwalk@pkdcure.org

Connecticut Chapter 

Chelsea LaManna

Chelsea LaManna

Connecticut Walk Coordinator

I have been volunteering at the Walk for PKD for years, and this year, have taken on the role of being Co-Coordinator! I am involved with the Foundation because I was diagnosed with PKD when I was very young, and have seen the destruction it can cause firsthand. Thankfully, my mom received her transplant five years ago after almost seven years on dialysis, but I have also lost family members to PKD. I am passionate about telling anyone and everyone I can about what PKD is and encouraging them to get involved so that we can find a cure to this terrible disease.
I’m a: New Coordinator
I need help with: Participant engagement, growing my Walk, recruiting volunteers and sponsorship strategies
I think I am really good at: Communicating with others and event management
I want to connect with fellow Coordinators about: What works and what doesn’t in terms of their experience with the Walk
Contact Chelsea: connecticutwalk@pkdcure.org

Denver Chapter 

Geno Leage

Geno Leage

Denver Walk Coordinator

I’m the Walk Coordinator for the Denver Chapter and have volunteered for the Seattle Chapter in the past. Not only am I a volunteer, a patient but I’m a contributing chef to the new PKD cookbook. Volunteering is as rewarding as a happy eater. See you in the kitchen!
I’m a: Veteran Coordinator
I need help with: Participant engagement and growing my Walk
I think I am really good at: Growing my Walk and creativity
I want to connect with fellow Coordinators about: What works and what doesn’t in terms of their experience with the Walk
Contact Geno: denverwalk@pkdcure.org

Detroit Chapter 

Mike Ahrens

Mike Ahrens

Detroit Chapter Coordinator

I am extremely excited to join the PKD Detroit Chapter team. My 35 years of experience in education and coaching has exposed me to the many health challenges young students face every day. There are many stats out there regarding PKD, but one that jumps out to me is the fact that ARPKD (Autosomal Recessive Polycystic Kidney Disease) affects 1 in 20,000 children and there is no cure.
My wife, Kim, was diagnosed with PKD in 2005 while she served as Executive Director of Finance in Grand Rapids for Booth Newspapers / Advance Publications. Prior to her diagnosis, there was no family history of PKD so we had a steep learning curve. After Kim was air-lifted from Muskegon to Ann Arbor for life-saving treatment, our family realized our lifestyle was changed forever. We have relocated to Ann Arbor to be near the University of Michigan Health System and her team of doctors. Plus, we have two daughters, Carly and Hayden, who live in the greater Detroit area so being near them is very rewarding.
After volunteering and conducting our own PKD Foundation fundraisers, we feel comfortable assisting the Detroit Chapter and its members. We sincerely believe that awareness is just as important as raising funds when fighting this disease. We also are looking forward to assisting the Detroit Chapter in any way we can.
I’m a: New Coordinator
I need help with: Growing my Chapter
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: What is working for their Chapter and why
Contact Mike: detroitchapter@pkdcure.org
Beth Skorupski

Beth Skorupski

Detroit Walk Coordinator

I’m a: New Coordinator
Contact Beth: detroitwalk@pkdcure.org

Houston Chapter

Christianne Disser

Christianne Disser

Houston Chapter Co-coordinator

I decided that it was important to volunteer for the Houston Chapter of the PKD Foundation because four generations of my family have been or are currently being impacted by PKD. By volunteering, I am fighting for a healthier, happier future for all my family members. I am all about helping to find a cure for PKD. Please join me in this effort.
I’m a: New Coordinator
I need help with: Growing my Chapter
I want to connect with fellow Coordinators about: What works to keep volunteers engaged
Contact Chris: houstonchapter@pkdcure.org
Bob Mensinger

Bob Mensinger

Houston Walk Coordinator

As the Houston Walk Coordinator, I’m excited to organize such a worthy event that will raise funds to end PKD, which has affected so many generations of families. Equally important is to also have the Walk, and other Chapter education events, increase awareness of PKD and provide the Houston area PKD community opportunities to exchange information and encouragement.
I’m a: New Coordinator
I need help with: Participant engagement
I think I am really good at: Growing my Chapter and Walk and getting volunteers
Contact Bob: houstonwalk@pkdcure.org

Hudson Valley Chapter

Darien and Josie DaCosta

Darien and Josie DaCosta

Hudson Valley Chapter Co-coordinators

Darien & Josephine (Josie) have been volunteering for the PKD Foundation’s Hudson Valley Chapter since 2009, and have been Volunteer Coordinators for the Chapter since 2011. Josie was diagnosed with PKD in late 2008, and received a living donor kidney transplant on October 29, 2009, donated by her youngest sister Frances.
We are: Veteran Coordinators
We need help with: Participant engagement and recruiting volunteers
We think we are really good at: Growing my Chapter and Walk and organizing events to grow the Chapter
Contact Darien and Josie: hudsonvalleychapter@pkdcure.org  
Heidi Cambareri

Heidi Cambareri

Hudson Valley Walk Coordinator

Heidi Cambareri began volunteering with the PKD Foundation in 2004. Currently the Hudson Valley Walk Coordinator, she also served as Hudson Valley Chapter coordinator for many years. Heidi was diagnosed with PKD at age 19 and participated in the tolvaptan clinical trial. She lives in NY with her husband and two daughters.

Indianapolis Chapter

Kathy Bartel

Kathy Bartel

Indianapolis Chapter Coordinator

I’m the Chapter Coordinator because I want to make a difference for the families living with PKD. I love to be engaged with members of our Chapter through our education and support meetings and the annual Walk For PKD. We have so much to learn from each other and we are better together!
I’m a: Veteran Coordinator
I need help with: Participant engagement and growing my Chapter and Walk
I want to connect with fellow Coordinators about: Chapter meeting ideas
Contact Kathy: indianapolischapter@pkdcure.org

Kansas City Chapter

Nicole Harr

Nicole Harr

Kansas City Chapter Coordinator

I joined the PKD Foundation as a Volunteer Chapter Coordinator 12 years ago! I was looking for a way to raise money for research and I found the most amazing people in Kansas City and across the country that are looking for the same thing – a day without worry that PKD will impact our children and future generations. I volunteer for my children, Emily and Hunter. I am willing to accept what having PKD may mean to me in the future, but I am not willing to accept the effects of this disease for my children. I also work for the PKD Foundation as the Director of Advocacy and Community Engagement.
I’m a: Veteran Coordinator
I need help with: We have built a very consistent Chapter, offering education, support and fundraising events. I am looking for new ideas!
I think I am really good at: Participant engagement, growing my Chapter, and getting volunteers
I want to connect with fellow Coordinators about: Out-of-the-box ideas that have been successfully implemented!
Contact Nicole: kansascitychapter@pkdcure.org
Sue Full

Sue Full

Kansas City Walk Coordinator

I became a volunteer for the PKD Foundation in 2002 because my best friend was living with PKD and I wanted to take an active part in finding a treatment or a cure for PKD. I have made many friends in the PKD community and am honored to work alongside them as a volunteer and in my staff role as the Director of Community Fundraising.
I’m a: Veteran Coordinator
I think I am really good at: Participant engagement, growing my Walk, and getting volunteers
I want to connect with fellow Coordinators about: I like learning from and engaging with all coordinators. Discussing ideas and learning from others, helps me to offer the most comprehensive experience in my community
Contact Sue: kansascitywalk@pkdcure.org
Peggy Robinson

Peggy Robinson

Kansas City Fundraising Coordinator

I’ve been working with the PKD Foundation since the late 90’s, participating in the Walk for PKD and as an active member of the local Chapter. As the Fundraising Coordinator, I organize four fundraising events locally – my favorite project being the Cocktails for a Cure. I have a son and daughter, two stepsons, and two granddaughters. My husband Craig and I nurture a love of wine, travel extensively, and enjoy visiting new and exciting places around the world.
I’m a: Veteran Coordinator
I need help with: Recruiting volunteers and planning and executing fundraising events
I think I am really good at: Getting volunteers, securing donations for events and finding new fundraising activities
I want to connect with fellow Coordinators about: Growing events for larger funds for PKD
Contact Peggy: kansascityfundraising@pkdcure.org
Jill Riester

Jill Riester

Kansas City Education Coordinator

Jill has been a volunteer leader for the Kansas City Chapter since it officially began in 2004. She began volunteering for the Walk for PKD and was our Walk Coordinator for two years. She has also served as the team Coordinator for the Walk for PKD and is currently our Education Coordinator. No matter what role she has taken on during her years of service as a volunteer, her dedication to PKD patients is steadfast and unwavering. If there is a need, Jill is there with a smile, a warm hug and fresh baked cookies.
I’m a: Veteran Coordinator
I think I am really good at: Participant engagement and getting volunteers
I want to connect with fellow Coordinators about: What works and what doesn’t in terms of their education
Contact Jill: kansascityeducation@pkdcure.org

Las Vegas Chapter 

Cia’rra Craig

Cia’rra Craig

Las Vegas Education Coordinator

I was not familiar with PKD until my daughter Kendall, now 3, was diagnosed with ARPKD in utero. With the amazing support I received from the connections I made through the PKD Foundation, I was able to stay strong, positive and hopeful during my pregnancy and thereafter. My family knows you can never prepare for something like this, and not every story or outcome is the same, so we continue to take it day by day. Being able to open up, get advice, ask questions and get suggestions about doctors or certain medications has been so helpful to our family over the years. Finding the support I did through the people I met in the PKD community really kept me going and I wanted to be a part of that support and spreading awareness about PKD with others who were just as lost as I was. I love my daughter with every fiber of my being and I want her to have every opportunity available to her. I’ll do everything in my power to help find a cure and #ENDPKD. I look forward to being the Education Coordinator and being a part of that support for our Las Vegas Chapter.
I’m a: New Coordinator
I need help with: Participant engagement and recruiting volunteers
I think I am really good at: Growing my Chapter/Walk
I want to connect with fellow Coordinators about: PKD event ideas or scheduled group meetings/activities
Contact Cia’rra: lasvegaseducation@pkdcure.org 
Toni Stuart

Toni Stuart

Las Vegas Walk Co-coordinator

I found out that I have PKD eight years ago. There is no one on my Mom’s side of my family with it and I know nothing about my Dad’s. I volunteered to be Walk Coordinator to inform my community about this disease and to raise funds to find a cure. I’m currently in a clinical trail with Metformin through UC Denver. I will do anything I can to find a cure.
I’m a: New Coordinator
I need help with: Participant engagement and growing my Chapter and Walk
I think I am really good at: Getting volunteers
I want to connect with fellow Coordinators about: How to get sponsors
Contact Toni: lasvegaswalk@pkdcure.org 
Dennis Stuart

Dennis Stuart

Las Vegas Walk Co-coordinator

My involvement with PKD began eight years ago when I found out my wife has PKD. Fortunately, my sons show no signs of the disease, but it is always on our minds. My wife and I are getting as involved as we can with the PKD Foundation and along with all Foundation members, “Will” find a cure.
I’m a: New Coordinator
I need help with: Participant engagement and growing my Chapter and Walk
I want to connect with fellow Coordinators about: How to get more sponsors
Contact Dennis: lasvegaswalk@pkdcure.org

Long Island Chapter

Gillian Kolodny

Gillian Kolodny

Long Island Chapter and Walk Coordinator

Los Angeles Chapter

Dwight Odland

Dwight Odland

Los Angeles Chapter Coordinator

I got involved as Chapter Coordinator in 2006 because I saw a clear need for improved patient education and support. I enjoy meeting fellow PKD patients and family members, and doing what I can to help them in this journey. I also enjoy helping with the annual PKD Walk so that we can raise money for research to bring an end to this disease. In addition, I joined the PKD Foundation Board of Trustees in 2013 and have also represented the PKD patient perspective at two international conferences. My personal mission is to improve “standards of care” for all PKD patients.
One of my favorite things about being a part of the PKD Foundation is meeting other volunteers and brainstorming / collaborating on how we can be more effective making a positive difference in the lives of our fellow PKD
I’m a: Veteran Coordinator
I need help with: Walk publicity and sponsorship ideas
Contact Dwight: losangeleschapter@pkdcure.org
Mary Suydam

Mary Suydam

Los Angeles Education Coordinator

PKD has always been part of my life. My grandmother, mother, and uncle all passed away younger than they should have from complications of ADPKD, and in my 20s I learned that I had it too. Two of my children also have it. I was fortunate to receive a transplant in 2011 that has given me a second chance at life. Now that I have retired and moved back to the state I love, California, I want to work with the PKD Foundation as a volunteer to raise awareness about this disease, promote donor awareness, and be part of the solution for finally ending its terrible toll.
I’m a: New Coordinator
I need help with: Participant engagement and growing my Chapter
I think I am really good at: Organization and follow-through
I want to connect with fellow Coordinators about: How to grow the Chapter in a new area and successful ideas for finding and encouraging new participation.
Contact Mary: losangeleseducation@pkdcure.org
Andy Tang

Andy Tang

Los Angeles Walk Coordinator

I’m a: Veteran Coordinator
I need help with: Participant engagement, growing my Walk, recruiting volunteers
I think I am really good at: Can always improve
I want to connect with fellow Coordinators about: Day of Walk supplies/marketing materials
Contact Andy: losangeleswalk@pkdcure.org

Memphis Chapter 

Karyn Waxman

Karyn Waxman

Memphis Chapter Coordinator

Diagnosed with PKD nearly 17 years ago, I helped establish the Memphis Chapter and have acted its Coordinator for the past 16 years. Believing very strongly in the research being done to find treatments and a cure, I have participated in the CRISP I, II, and III observational studies, the original dosing trial for Tolvaptan, the TEMPO open-label study, and several PKD Cohort and genetic Studies at Emory in Atlanta and U of Maryland in Baltimore. Other volunteer service includes participation in the Volunteer Action Committee and serving 8 years as both an ad hoc and fully vested member of the PKD Foundation Board of Trustees. My passion lies in heightening PKD awareness through fundraising events, talking to anyone, and everyone, about PKD, and offering support and encouragement to those who are newly diagnosed or who those who simply need to connect with others.
Contact Karyn: memphischapter@pkdcure.org

Milwaukee Chapter 

Jacque English

Jacque English

Milwaukee Chapter and Walk Coordinator

As the Milwaukee Chapter and Walk Coordinator I actively fight to END PKD. Being a mother myself and having lost my mom to PKD, I value the vision of a world without PKD. I am honored to support the Foundation and the hope it provides all of us impacted by PKD.
I’m a: Veteran Coordinator
I need help with: Participant engagement
I think I am really good at: Growing my Chapter/Walk
I want to connect with fellow Coordinators about: Increasing team fundraising engagement for the Walk
Contact Jacque: milwaukeechapter@pkdcure.org

Nashville Chapter 

Carol Boeing

Carol Boeing

Nashville Chapter and Education Coordinator

I volunteer as coordinator of the Chapter because PKD affects my family and I want to make a difference. I want all families to benefit from the important research and information made possible through the PKD Foundation. Join me in helping to make a Cure for PKD a reality!
I’m a: Veteran Coordinator
I think I am really good at: Coordinating educational chapter meetings
Contact Carol: nashvillechapter@pkdcure.org

National Capital Chapter 

Ruchi Gill

Ruchi Gill

National Capital Chapter Coordinator

I volunteer as the Chapter Coordinator for the National Capital Chapter because I have Polycystic Kidney Disease. Meeting others who understand this disease inspires me to advocate for a cure and gives me hope that together we will achieve a better tomorrow!
Contact Ruchi: nationalcapitalchapter@pkdcure.org
Michelle Hoffmann

Michelle Hoffmann

National Capital Walk Coordinator

With my daughter, Kyle Tacconi, we are the coordinators for the National Capital Walk. I walk in support of my husband who has PKD. He received a living donor kidney from his sister in 2015 — on the same day his dad died 50 years earlier of PKD. I am committed to help raise funds to find a cure for PKD.
We are: New Coordinators
We need help with: Participant engagement and recruiting volunteers.
We’re good at: Organizing
We want to connect with other Chapter Coordinators: To learn what tips, ideas and suggestions they offer to have a successful Walk.
Contact Michelle: nationalcapitalwalk@pkdcure.org 
Kyle Tacconi

Kyle Tacconi

National Capital Walk Coordinator

I am the daughter of a PKD patient, and I became involved with the PKD Foundation shortly after my father received a living donor kidney from his sister in 2015 — on the same day his dad died 50 years earlier of PKD. I am committed to help raise funds to find a cure for PKD for my family. I grew up in Ashburn, VA and currently live in Aldie, VA with my husband and two sons.
We are: New Coordinators
We need help with: Participant engagement and recruiting volunteers.
We’re good at: Organizing and being creative
We want to connect with other Chapter Coordinators: To learn what tips, ideas and suggestions they offer to have a successful Walk.
Contact Kyle: nationalcapitalwalk@pkdcure.org

Nebraska Chapter

Kim Beger

Kim Beger

Nebraska Chapter Coordinator

We volunteer because four out of Nate’s six siblings have PKD, including Nate. We have experienced first hand how comforting it is to know and talk to others who have PKD. We want to make sure no one feels alone when living with PKD by offering support and encouragement to those who are newly diagnosed or who just need to connect with others. Together, we all can work towards a treatment, this is why we support PKD by raising funds and awareness at the Nebraska Walk. We welcome anyone who wants to join the Nebraska Chapter to fulfill the PKD mission. We have one adult son and when not working on PKD we like to travel, always have a home improvement project going and volunteer in our community.
Contact the Begers: nebraskachapter@pkdcure.org
Nate Beger

Nate Beger

Nebraska Walk Coordinator

We volunteer because four out of Nate’s six siblings have PKD, including Nate. We have experienced first hand how comforting it is to know and talk to others who have PKD. We want to make sure no one feels alone when living with PKD by offering support and encouragement to those who are newly diagnosed or who just need to connect with others. Together, we all can work towards a treatment, this is why we support PKD by raising funds and awareness at the Nebraska Walk. We welcome anyone who wants to join the Nebraska Chapter to fulfill the PKD mission. We have one adult son and when not working on PKD we like to travel, always have a home improvement project going and volunteer in our community.
I’m a: New Coordinator
I need help with: Everything this year
I think I am really good at: Setting up day of the walk
Contact Nate: nebraskawalk@pkdcure.org
Jennifer Tompkins Kirshenbaum

Jennifer Tompkins Kirshenbaum

Nebraska Education Coordinator

I am the PKD Foundation – Nebraska Chapter Education Coordinator. I live in Omaha with my husband and two daughters. I learned about PKD 15 years ago when my father was diagnosed. My focus will be on PKD advocacy, and will keep the chapter informed of important legislation.
Contact Jennifer: nebraskaeducation@pkdcure.org

New England Chapter 

Judy Ehrlich

Judy Ehrlich

New England Chapter and Education Co-coordinator

My connection to Polycystic Kidney Disease and the PKD Foundation goes back more than 25 years, during which I have been a volunteer and Chapter Coordinator. I am passionate about educating patients so we can advocate for ourselves and live our best life possible with PKD.
I’m a: Veteran Coordinator
I think I am really good at: Education Programs
Contact Judy: newenglandchapter@pkdcure.org 
Dean Lotito

Dean Lotito

New England Chapter Co-coordinator

New England Chapter Co-coordinator 
I started volunteering for the Foundation in 2002. I was overwhelmed by the dedication of my fellow volunteers, and that continues to this day. Helping people cope with PKD, and raising money towards a treatment and cure are very rewarding for me. The people I met through my work with the Foundation inspire me to HELP END PKD!
Contact Dean: newenglandchapter@pkdcure.org
Elizabeth Brooks

Elizabeth Brooks

New England — Boston Walk Coordinator

My name is Elizabeth and I am an ARPKD patient. I was diagnosed at age 12 and from there dove into the PKD community. I began selling END PKD bracelets at my school, giving awareness speeches, advocating in Washington DC and walking for PKD with my team Hogans Hero. I’ve met so many wonderful people through the PKD Foundation. I walk and volunteer for all the patients who deal with pain every day fighting this awful disease and so future generations will never have to suffer the full effects of PKD.
I’m a: New Coordinator
I need help with: Growing my Walk and recruiting volunteers
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: Keys to a successful Walk
Contact Elizabeth: bostonwalk@pkdcure.org

New Jersey Chapter 

Alex Coglianese

Alex Coglianese

New Jersey Chapter Coordinator

I volunteer because I lost my beloved father, Fred, and two of his sisters, my dear aunts Anne and Ninfa, to PKD. It is my goal that no other families suffer the devastating and untimely losses that my family has. By volunteering, I am able to honor the legacy of my father while working to build valuable connections with other families that have PKD. We all share the same goal…ending PKD and finding a CURE!
I’m a: Veteran Coordinator
I need help with: Growing my Chapter
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: Growing my Chapter
Contact Alex: newjerseychapter@pkdcure.org
Mark Kaufman

Mark Kaufman

New Jersey Education Coordinator

I’m volunteer because I have been through every phase of having had PKD. I have been in total renal failure, on dialysis for almost 4 years, transplanted now for 8 years and recently had recovered from skin cancer due to the immunosuppressive drugs I am taking. I feel very fortunate to be part of the PKD Foundation and always felt it was so important to pay it forward. The knowledge and life experience I bring hopefully will help others along their journey. We are all in this together. We share the same goal: END PKD!
I’m a: Veteran Coordinator
I need help with: Recruiting volunteers
I think I am really good at: Participant engagement and growing my Chapter
I want to connect with fellow Coordinators about: Setting up more fundraising events
Contact Mark: newjerseyeducation@pkdcure.org
Stacey McClain

Stacey McClain

New Jersey Walk Coordinator

I’m the Walk Coordinator for New Jersey because I want to know I’m doing everything I can to end PKD. I’m helping my friends, family and community learn more about PKD and have a little fun along the way at the biggest PKD event in the state each year.
I’m a: Veteran Coordinator
I need help with: Growing my Walk and recruiting volunteers
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: engaging more volunteers to help with our events
Contact Stacey: newjerseywalk@pkdcure.org

New Orleans Chapter 

Kerilyn Holmes

Kerilyn Holmes

New Orleans Chapter and Walk Coordinator

Hi, my name is Kerilyn, and I’m the Chapter and Walk Coordinator for New Orleans. By volunteering, I am able to give back to the foundation that is so dear to my heart. I am able to make a difference and at the same time meet others who are affected by PKD. I hope you can join me as we unite to fight to END PKD!
I’m a: Veteran Coordinator
I need help with: Growing my Chapter and Walk
I think I am really good at: Getting volunteers
I want to connect with fellow Coordinators about: Ideas to grow my walk
Contact Kerilyn: neworleanschapter@pkdcure.org
Ashley Allemore

Ashley Allemore

New Orleans Co-Walk Coordinator

Hey everyone!! I’m Ashley Allemore! I’m a new volunteer and part of the New Orleans Chapter! Many people in my family have been diagnosed with PKD and currently my dad is on hospice and we are making every moment count! We have lost some family members, but we stay super strong. My goal is to spread awareness to everyone I know about PKD. What better way than to volunteer for such a great cause! I try to see the positive in every situation and my heart is mushy marshmallows for PKD awareness!
Contact Ashley: neworleanswalk@pkdcure.org

New York City Chapter

Meg Munits

Meg Munits

New York City Chapter Co-coordinator

I first discovered the PKD Foundation when my son was born in 2011. He had enlarged kidneys in utero and was diagnosed with ADPKD when he was born. Since then, I strive to learn more about the disease, how it relates to the body, and how it affects people’s lives. I am currently working towards a master’s degree in clinical nutrition as a Registered Dietitian, specializing in PKD.
I’m a: New Coordinator
I need help with: Recruiting volunteers, participant engagement and growing my Chapter
I think I am really good at: Participant engagement
I want to connect with a fellow coordinator about:  Making connections with members and successful reoccurring support groups
Contact Meg: newyorkcitychapter@pkdcure.org
Sarah Giller

Sarah Giller

New York City Chapter Co-coordinator

My name is Sarah Giller and I am the Education Coordinator of the New York City Chapter of the PKD Foundation. I am personally affected by PKD as was my mother before me. I am working and will continue to work towards a cure for this devastating disease so that my children and all children don’t have to face a future with PKD. I hope you’ll join us as we unite to fight PKD.
I’m a: Veteran Coordinator
I need help with: Participant engagement
I think I am really good at: Engaging people at events
I want to connect with a fellow coordinator about:  Following up with new developments in research
Contact Sarah: newyorkcityeducation@pkdcure.org

North Texas Chapter 

Carolyn Morris

Carolyn Morris

North Texas Chapter Coordinator

My life experience with Polycystic Kidney Disease in my family has motivated me to volunteer and be committed to helping others facing the challenges of PKD. I talk to many people impacted by the disease, hear their story, see their tears, and try to provide support. We are so fortunate now there is the PKD Foundation to lead the charge in focusing on research to find a treatment for this disease. Technological advances and the internet provide information and connectivity for those searching for information about PKD. I have been a Chapter Coordinator for the North Texas Chapter since 2004. The Chapter holds various fund raising events and the signature North Texas Walk/5K Run the Square event each fall.
Contact Carolyn: northtexaschapter@pkdcure.org
Betsy Cook

Betsy Cook

North Texas Education Coordinator

Betsy Cook has been involved in leadership roles with the North Texas and Houston Chapter for over 10 years. She loves getting people affected by PKD educated about PKD. She wants everyone connected to the PKD Foundation and all the resources offered.
I’m a: Veteran Coordinator
I need help with: Participant Engagement
I think I am really good at: Building PKD Relationships
I want to connect with fellow Coordinators about: Out-of-the-box Chapter education events/support functions
Contact Betsy: northtexaseducation@pkdcure.org

Northern Indiana Chapter

Jeff and Laura Moyer

Jeff and Laura Moyer

Northern Indiana Chapter Co-coordinators

We are the Northern Indiana Chapter Co-Coordinators and hope one day nobody has to suffer PKD. This runs in 15 of Laura’s immediate family members and she was part of the living donor pairing exchange in 2011. You are not alone, we are here to help you in any way we can.
We are: Veteran Coordinators
I think I am really good at:
Laura: Participant engagement and getting volunteers
Jeff: Logistics and thinking out of the box
Contact Laura and Jeff: northernindianachapter@pkdcure.org

Oklahoma Chapter

Kim Holekamp

Kim Holekamp

Oklahoma Chapter Coordinator

I’m the Chapter Coordinator for Oklahoma because I am the third generation of my family to have PKD and I want to make a difference for my future generations. By volunteering, I am able to build valuable connections with other families that have PKD as well as learn about important research. This is one of the most rewarding experiences I have had and I encourage you to join me as we unite to fight PKD!
I’m a: New Coordinator
I need help with: Participant engagement, growing my Chapter, and recruiting volunteers
I want to connect with fellow Coordinators about: Growing my Chapter
Contact Kim: oklahomachapter@pkdcure.org 
Steve Holekamp

Steve Holekamp

Oklahoma Walk Coordinator

I’m a: New Coordinator
I need help with: Growing my Walk and recruiting volunteers
I want to connect with fellow Coordinators about: Promoting my Walk
Contact Steve: oklahomawalk@pkdcure.org

Orange County Chapter

Kathy Herritt

Kathy Herritt

Orange County Chapter Coordinator

Like many of us, I grew up very familiar with PKD. Many of my family members have been afflicted by this disease, including my mother, brothers, aunt, uncles and cousins. I believe that education and awareness are so important in being able to be a strong advocate for ourselves and those we love. I was so fortunate to receive a healthy kidney on July 6, 2016, from a college roommate. However, I don’t believe my kidney journey ends there. I believe in being involved in the PKD Foundation so that together, we can help find a cure to end this disease. Please feel free to call me anytime and also please “Like” our Orange County PKD Facebook page, as this is our primary means of advertising our meetings. I look forward to getting to know all of you!
I’m a: New Coordinator
I need help with: Growing my Chapter and Facebook posting skills
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: Tips on finding speakers
Contact Kathy:  orangecountychapter@pkdcure.org

Philadelphia Chapter

Maureen Bickings

Maureen Bickings

Philadelphia Walk Coordinator

I am the Walk Coordinator for the Philadelphia Chapter. I volunteer for those before me who have fought this battle and to give light those who are facing it. I too fight ADPKD. I support our walkers with networking, raising awareness but most importantly, building a special bond so they know no one fights this alone!
I’m a: Veteran Coordinator
I need help with: Growing my Walk
I think I am really good at: Participant engagement and getting volunteers
I want to connect with fellow Coordinators about: Special events that could draw attention to our walk
Contact Maureen: philadelphiawalk@pkdcure.org 

Phoenix Chapter

Terri Simon

Terri Simon

Phoenix Chapter Co-coordinator

I am the Chapter Co-Coordinator for the Phoenix Chapter because I suffer from PKD, as did my father. I want to be involved in helping others who travel the same path as I, while learning from those who are further along in the journey. I feel that by reaching out to one another, we can provide support while learning about the latest research and treatment possibilities. Only together can we work to End PKD!
Contact Terri: phoenixchapter@pkdcure.org   
Monica Magoon

Monica Magoon

Phoenix Chapter Co-coordinator

I’m a Chapter Coordinator for Phoenix because PKD runs in my husband’s family and I want a better tomorrow for my children. By volunteering, I am able to connect and hopefully help other families affected by PKD. I encourage you to join me in the fight as we shape a better tomorrow without PKD.
I’m a: New Coordinator
I need help with: Participant engagement and growing my Chapter
I think I am really good at: Getting volunteers
I want to connect with fellow Coordinators about: Growing a Chapter and locating PKD patients and their families
Contact Monica: phoenixchapter@pkdcure.org   
Risa Simon

Risa Simon

Phoenix Education Coordinator

Using her voice to encourage proactive-choice, this fierce patient advocate is elevating patient empowerment opportunities at every turn. Whether she’s speaking, writing, mentoring or volunteering for the PKD Foundation, the National Kidney Foundation or the American Association of Kidney Patients to advocate for better outcomes, her inspirational message touches the hearts of all audiences.
Risa thought her career path in dental practice management was set for life until a force stronger than her master plan came into play. The same genetic kidney disease that took her father’s life in his early 40’s (Polycystic Kidney Disease) started to impact the quality of her life. This awareness caused Risa to take a deeper dive from a more proactive point of view.
While exploring new territory, Risa uncovered blind spots in patient education, which included a withholding of essential information and a reluctance to encourage a preemptive kidney transplant as a superior option.  These discoveries compelled Risa to morph her talents into creating success strategies for the kidney patient community and that’s exactly what’s she doing.
Today, you can find Risa paying it forward with her heart strapped to her sleeves while serving as the founder and CEO of the TransplantFirst Academy and The Proactive Path. Risa’s vision is straightforward: to motivate fellow kidney patients to fight for their best life possible.
Risa’s patient empowerment programs and motivational books (In Pursuit of a Better Life and Shift Your Fate) continue to inspire kidney patients to become their own best advocate and fight for their best life possible. For more information visit: www.TransplantFirst.org/Finding-Kidney-Donors
I’m a: Veteran Coordinator
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: Empowering patients to become their own best advocate
Contact Risa: phoenixeducation@pkdcure.org

Pittsburgh Chapter

Kristee Adams

Kristee Adams

Pittsburgh Chapter Coordinator

I joined the PKD Pittsburgh Chapter over 10 years ago after being diagnosed. With such a great group of people in the Chapter, taking on a leadership role was easy. While PKD impacts all of our lives, we work hard to hopefully lessen the impact on our children and grandchildren.
I’m a: Veteran Coordinator
I need help with: Growing my Chapter
I want to connect with fellow Coordinators about: Chapter growth ideas
Contact Kristee: pittsburghchapter@pkdcure.org  
Nancy Kaminski

Nancy Kaminski

Pittsburgh Education Coordinator

Three generations of my family have been affected by PKD and in 2013, I had a successful kidney transplant. I have been involved with the Pittsburgh Chapter for more than 10 years, and Walk Coordinator since 2009. I have met so many people and made good friends through my association with the Foundation — it is a great source of networking and support for those with PKD!
I’m a: Veteran Coordinator
I need help with: 
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: Recruiting sponsors
Contact Nancy: pittsburgheducation@pkdcure.org

PKD Parents Chapter

Michele Karl

Michele Karl

PKD Parents Chapter Co-coordinator

Michele has three sons: Max is 8, Nate is 5, and Gabriel is 2. Max and Gabe have ARPKD. They were diagnosed in 2006 when Gabe was born at 34 weeks gestation. Subsequently Max was diagnosed but did not have any symptoms at the time. Nate who is now 5 does not have ARPKD. Both boys currently are being treated for high blood pressure, but have good kidney function.
Contact Michele: pkdparents@pkdcure.org   
Kim Zlatin

Kim Zlatin

PKD Parents Chapter Co-coordinator

Our family first learned of PKD in 2015 when our then 4-year-old daughter was diagnosed with a new mutation of ADPKD. We have been so thankful for the supportive PKD Foundation community and hopeful that the Foundation will help lead us to treatment and/or a cure for future generations. I am looking forward to being one of the Co-Coordinators of the PKD Parents Chapter because I know how scary it is to learn that your child has PKD, but I also know that more awareness and support can help parents feel empowered and less alone in their child’s PKD journey.
I’m a: New Coordinator
I need help with: Participant engagement and growing my Chapter
I think I am really good at:  Participant engagement
I want to connect with fellow Coordinators about: Supporting new families and bring awareness to our Chapter
Contact Kim: pkdparentschapter@pkdcure.org

Portland Chapter

Linda Herman

Linda Herman

Portland Chapter Coordinator

My husband and I were involved with the PKD Walk when we moved to Portland 16 years ago. We took a break to have a baby, get a transplant, brain surgery for our 5 year old who had a brain cyst, do foster care, adopt our second child, have radiation for a benign brain tumor (myself), and survive 8 more surgeries for complications related to PKD (my husband). After all that we’re back, more determined than ever!
I’m very excited to be part of such an amazing group of people who are committed to finding a cure for this terrible disease! As my husband always says, “There’s always someone much worse than myself.” With that attitude you can accomplish anything!
I’m a: New Coordinator
I need help with: Growing my Chapter
I think I am really good at: Participant engagement and education
I want to connect with a fellow coordinator about: Getting Walk sponsors
Contact Linda: portlandchapter@pkdcure.org   
Alex Hagen

Alex Hagen

Portland Education Coordinator

PKD runs in my family and I want to make a difference by providing the local area with resources and opportunities to connect with one another. It is rewarding to join together and learn more about what we can do to fight PKD through education, nutrition, advocacy, support, fundraising, and research.
I’m a: Veteran Coordinator
I need help with: Participant engagement, growing my Chapter, and recruiting volunteers
I think I am really good at: Organizing!
I want to connect with fellow Coordinators about: Growing the Chapter
Contact Alex: portlandeducation@pkdcure.org

Sacramento Chapter

Julia Adams

Julia Adams

Sacramento Chapter Coordinator

PKD touched my life when my daughter was diagnosed in the ER at the age of 2. Neither my husband nor myself have PKD, she is in the 10 percent of people who are diagnosed with a spontaneous mutation of ADPKD. Her kidney function began a rapid decline in her early 20s and she received a live donor transplant from her father three years ago at the age of 23. The impact of PKD on my daughter’s life inspired me to become involved with fundraising for the Foundation in the 1990s. Two years ago, I became the Sacramento Chapter Coordinator as a way to give and receive support from others dealing with this disease in my community. I am very grateful for the wonderful people I have met through this organization, they are my PKD silver lining. I am passionate about raising funds for research so we can END PKD in our lifetime!
I’m a: New Coordinator
I need help with: Finding wineries to donate to “Corks for a Cure” fundraising event
I think I am really good at: Participant engagement and coordinating the fundraiser “Corks for a Cure”
Contact Julia: sacramentochapter@pkdcure.org   
Larianne Austin

Larianne Austin

Sacramento Walk Coordinator

I volunteer for the PKD Foundation for the 5 generations of my family that have been affected by PKD. My hope is that a treatment for PKD is found in my lifetime so that my daughter will not have endure the pain and suffering of PKD.
I’m a: Veteran Coordinator
I need help with: Sponsorship
I think I am really good at: Participant engagement and getting volunteers
Contact Larianne: sacramentowalk@pkdcure.org

Salt Lake City Chapter

Parker Burns

Parker Burns

Salt Lake City Chapter Coordinator

I chose to volunteer with the Salt Lake City Chapter because I want to help others with PKD. I was diagnosed with PKD at the age of 12, and it can be very frustrating to understand at that age. I have gone through those frustrations, and hope to help others with theirs.
I’m a: New Coordinator
I need help with: Participant engagement and growing my Chapter
I think I am really good at: Participant engagement and getting volunteers
I want to connect with fellow Coordinators about: What has worked well in the past and what advice they would offer for a new Coordinator.
Contact Parker: saltlakecitychapter@pkdcure.org

San Antonio Chapter

Mark Ruffin

Mark Ruffin

San Antonio Chapter Coordinator

I volunteer as the San Antonio Chapter Coordinator because of my wife Patti’s medical history of PKD (hers and her family). By engaging critical partners here in San Antonio, I can help others faced with the challenges of this disease, and improve chances of finding a cure. Without others engagement, nothing happens!
I’m a: New Coordinator
I need help with: Involvement by the medical community to provide education and support for the south Texas community
I think I am really good at: Growing my Chapter and working with our strong volunteer team
I want to connect with fellow Coordinators about: Establishing support groups for PKD patients and their families. Get people to come to more education events to learn about their disease and the options available to them
Contact Mark: sanantoniochapter@pkdcure.org  
Patti Ruffin

Patti Ruffin

San Antonio Walk Coordinator

My paternal grandmother, father, two uncles, and sister lost their battle too young to PKD. After two years on dialysis due to PKD, a generous coworker came forwarded to donate her kidney to me in December 2005. I have been blessed with this new lease on life. When I retired in 2009,  I knew I needed to step up as the volunteer San Antonio Walk for PKD Coordinator. When people ask me why I volunteer, I have three words: best paycheck ever.
I’m a: Veteran Coordinator
I need help with: Participant engagement
I think I am really good at: Growing my Walk and getting volunteers
I want to connect with fellow Coordinators about: How to get fundraising from teams — we have big teams, but little revenue
Contact Patti: sanantoniowalk@pkdcure.org

San Diego Chapter

Andrea Breuninger

Andrea Breuninger

San Diego Walk Coordinator

I have had the privilege of volunteering as the San Diego Walk Coordinator for the last nine years. Although I do not have PKD, it affects many of my family members. It excites me to bring the PKD community together in San Diego each year to focus on raising funds that will be used for research and to further the awareness of the disease.
I’m a: Veteran Coordinator
I need help with: Sponsorship
I think I am really good at:  Day of Walk event
I want to connect with fellow Coordinators about: Sponsorship and team engagement
Contact Andrea: sandiegowalk@pkdcure.org

San Francisco Chapter

Laura Callahan

Laura Callahan

San Francisco Chapter Coordinator

I have committed to being Coordinator because I see a real need to connect the people affected by PKD with resources available through the PKD Foundation as well as the medical and scientific community. My husband and his family have been greatly affected by PKD and our daughter was diagnosed at a young age. If we all work together, we really can make a difference and find a cure!
I’m a: New Coordinator
I need help with: Participant engagement, growing my Chapter, and recruiting volunteers
I think I am really good at: Working hard to execute a meeting
I want to connect with fellow Coordinators about: Recruiting volunteers — people say they want to help, but don’t follow through
Contact Laura: sanfrancsicochapter@pkdcure.org

Seattle Chapter

Lara Macklin

Lara Macklin

Seattle Chapter Coordinator

I’m a: Veteran Coordinator
I need help with: Large fundraising strategy
I think I am really good at: Participant engagement and growing my Chapter
I want to connect with fellow Coordinators about: Engaging with large dollar sponsors
Contact Lara: seattlechapter@pkdcure.org

South Florida Chapter

Susan Caplan

Susan Caplan

South Florida Chapter Coordinator

I’m Susan Caplan. I am a substitute teacher in the Boca Raton area. I am living successfully with PKD. One of our two sons has PKD. I am fighting for the Next Generation. After 15 years as the NYC Coordinator and relocating to FL, my goal is to raise money for PKD research and to inform and help support the people of our PKD Community.
I’m a: Veteran Coordinator
I need help with: Participant engagement and recruiting volunteers
I think I am really good at: Growing my Chapter and supporting newly diagnosed PKD people
Contact Susan: southfloridachapter@pkdcure.org 
Georgina Habermann

Georgina Habermann

South Florida Walk Coordinator

This is my third year as the Volunteer Walk Coordinator for the South FL Chapter. I have PKD and so do three of my brothers. After the death of my father back in 2011, I decided to get more involved with the PKD Foundation in order to honor his memory and to help bring hope and awareness to our local community. By raising funds and gathering as a PKD family, we will continue working together for a better future.
I’m a: Veteran Coordinator
I need help with: Growing my Walk and finding sponsors
I think I am really good at: Growing my Walk
I want to connect with fellow Coordinators about: Finding big sponsors
Contact Georgina: southfloridawalk@pkdcure.org

St. Louis Chapter

Jean Sommer

Jean Sommer

St. Louis Chapter & Walk Coordinator

I have been the volunteer Chapter and Walk Coordinator for the St. Louis Chapter since 2014. I decided to volunteer because, as an ADPKD and PLD patient, I wanted to learn as much as I could about my conditions and I wanted to make a difference in the lives of others. Learning about PKD and PLD from speakers at local events and national PKD Foundation events, like the PKD National Conference, also helped me face my fear of these diseases. I was very much at peace when I had my liver transplant in August 2016. As a Coordinator, I hope that I can help ease the fears of others by providing education meetings for my Chapter members and rallying them together for our annual Walk for PKD. I was also inspired to volunteer because PKD runs in my family—both my sister and my brother are affected by this disease. In addition, I have two children who each have a 50 percent chance of having PKD. I enjoy organizing the Walk because I want there to be treatments or a cure so that my children, and others, will not have to go through what I have gone through.
I’m a: Veteran Coordinator
I need help with: Growing my Chapter and Walk, recruiting volunteers, and getting companies involved
Contact Jean: stlouischapter@pkdcure.org

Tampa Chapter

Celia Nichols

Celia Nichols

Tampa Chapter Coordinator

I was born in Tampa, Fla. because of my Dad’s hard work and determination, and he’s been my guiding light ever since. I lost my grandfather, my Dad, and one of my sisters to this disease and a day doesn’t go by that I don’t miss them and know that we must continue the fight and find a cure! My sister who had PKD, introduced me to the PKD Foundation years ago, when we both learned we had it and she started making donations. I remember the conversation when she told me that I really needed to get involved. In 2001, I decided to join and walked in the Tampa Walk, I pulled my two son’s in their wagon, along Bayshore Blvd., and met some great people. My participation wavered over the years; raising kids, demands of my career and then problems with my health. At the end of 2012, seven months after receiving my second kidney transplant, I was asked to volunteer for the Orlando Chapter. I felt amazing, strong and very determined, and I wanted to do something to make a difference! I had been on dialysis for almost four years, doing all modalities, and I finally had my life back and wanted to help and give back. Even though the Orlando Chapter was not in my town, it was an opportunity to be a part of this wonderful Foundation – one that will continue to make a difference for many generations to come. In 2014, I was fortunate that a local opportunity to volunteer for the Tampa Chapter came about, where I could devote more time to people in my area. Since I’ve started volunteering in Tampa, we have been able to bring back support meetings, education events and really support the Walk. I’ve met some wonderful mentors and volunteers, and by working together I know we’re doing our best to raise more and more money each year. Volunteering is my ministry because I can share my story and give back and give hope. By being a Coordinator, I believe I have a very meaningful position where I can work with other constituents at the local level as well as nationally at events like United on the Hill, PKD Conference and our annual Leadership Conference. I am grateful to all those that work with the PKD Foundation because together, we are much stronger!
I’m a: Veteran Coordinator
I need help with: Recruiting volunteers
I think I am really good at: Participant engagement and growing my Chapter
I want to connect with fellow Coordinators about: Attracting other volunteers to support Chapter events
Contact Celia: tampachapter@pkdcure.org
Lorin Valk

Lorin Valk

Tampa Walk Coordinator

I received my transplant in May 2016 after being on dialysis for three and a half years. I volunteer for the PKD Foundation because I’m from a family with a three-time generation history of PKD. I’m trying to continue my uncle’s dream because he was involved with the Foundation for many years when I was younger and I really didn’t know what PKD was. I first heard about PKD because my mother found out she also had PKD. This meant she couldn’t donate to my uncle. This is the first time that it hit home what PKD was. Before that moment, all I could remember is my uncle visiting with his traveling machine for dialysis. I never thought that would be me until 2016. This is why I want to continue my uncle and my family’s dream to find a cure to END PKD. I’m volunteering for the future generations of patients, families and the support of others who have PKD. I’m a: Veteran Coordinator
I need help with: How to find sponsorship & recruiting strong volunteers
I want to connect with fellow Coordinators about: Finding big sponsorships: what worked, what didn’t and why.
Contact Lorin: tampawalk@pkdcure.org

Tidewater Chapter

David Damiani

David Damiani

Tidewater Chapter & Walk Coordinator

I’m the Chapter coordinator for Tidewater Virginia because several years ago, I learned what PKD is when I discovered that it affected the lives of several acquaintances and business clients. I was shocked to learn that a life-threatening disease I’d never heard of before was so widespread, yet so little known. Fortunately, not long after that I learned about the great work of the PKD Foundation in both working to find a cure and in improving the quality of life and information for all those PKD affects. I was moved to get involved with the Foundation — if PKD has affected your life or the life of someone you know, I hope you will join me!
I’m a: Veteran Coordinator
I need help with: Growing my Chapter and Walk
I think I am really good at: Participant engagement
I want to connect with fellow Coordinators about: Growing regular involvement in the Chapter and corporate Walk sponsorship
Contact David: tidewaterchapter@pkdcure.org

Western New York Chapter 

Darlene Korytkowski

Darlene Korytkowski

Western New York Walk Coordinator

I’m a: New Coordinator
Contact Darlene: westernnewyorkwalk@pkdcure.org   
Laurie Hammond

Laurie Hammond

Western New York Walk Coordinator

I’m a: New Coordinator 
Contact Laurie: westernnewyorkwalk@pkdcure.org