News and Information
A note from your Chapter Coordinator:
Greetings to the Delaware PKD Community,
Well, my first year as Delaware's Chapter Coordinator is under my belt. It was a learning experience with a couple notable successful events. Thank you and congratulations to Erin and Patty, the Chapter's Walk Coordinators, for a successful, fun, and well-organized event. Thank you to Rosalie and my daughter, Beth, for their efforts in raising raffle items and drumming up attendees for a sellout crowd to the Women and Wine dinner. Thank you to Vincent for spearheading the Dutch Country market public awareness fundraiser.
It's a new year with new opportunities to raise awareness for PKD and to raise funds to help find a cure. More specifically, I and committed chapter volunteers will:
1. Meet with those affected by PKD to share stories, inform them of the resources locally and nationally and to recruit them to get involved with our chapter.
2. Work with nephrology offices and dialysis centers to reach PKD patients to inform them of our Delaware Chapter and the resources of the PKD Foundation.
3. Hold events to raise funds to help find a cure.
Put these dates on your calendar. You will receive more details as events near.
August 16. Chicks for Charity Dinner in Lewes
September 17. Annual Walk for a Cure in New Castle County
October 20. Women and Wine Dinner in Rehoboth
PKD runs through families. It affects our past, present and future. Here are 7 ways you can help us find a cure to bring about a better future. How many of the 7 can you commit to?
1. Make sure you are on the PKD Foundation mailing and emailing list.
2. Friend the Delaware Chapter of the PKD Foundation Facebook page.
3. Attend events and bring your family and friends.
4. Help get raffle items donated for our events.
5. Sign up for AmazonSmile and select the PKD Foundation for your charity. One-half of one percent of the costs of all "smile" purchases goes to the Foundation. I just checked all my recent purchases and they all qualified for the charity donation.
6. Hold your own DIY fundraiser. Go to pkdcure.org and search DIY for ideas.
7. Participate in clinical studies to help find a treatment/cure. Sign up to receive ACT Alerts at pkdcure.org/clinicalstudies. Take study information to your nephrologist.
In June I will attend the Coordinators' Leadership workshop and National Convention of the PKD Foundation. I am honored to represent you. I will post highlights of these meetings on our Facebook page when I return.
As always, if you want to meet and chat or learn how you can get involved with the Delaware Chapter, please email me at DelawareChapter@PKDCure.org or call 302-373-7179.
For a cure,
Carol Soha, Volunteer
Delaware Chapter Coordinator
PKD Patient Handbook
The newly updated PKD handbook is now available! The revised handbook has undergone extensive reviews and updating by PKD experts. Topics include PKD signs and symptoms, diet and nutrition, kidney failure, transplantation and more.
Download your digital copy today!
Local Events and Meetings
Chapter meetings are another opportunity for you to have your questions and concerns about PKD addressed. We will do our best to provide you with answers or direct you to someone that can assist you. Everyone is welcome!
Although the Delaware Chapter does not have any meetings planned at this time, we would still love to hear from you! If you have any questions concerning support meetings, please email our Volunteer Chapter Coordinator at firstname.lastname@example.org.
Check back for updates!
Delaware Awareness Booth
14th Annual Wilmington Wellness Day
Saturday, April 30
11 a.m. to 3 p.m.
Rodney Square in downtown Wilmington
11th and King streets
Wilmington, DE 19801
We are pleased to join 100 exhibitors at this wellness day which may attract as many as 2,000 attendees. Come join us to share your story with others.
Delaware Dutch Country Farmer's Market
Fridays and Saturdays in March (starting March 11)
10 a.m. to 2 p.m.
Dutch Country Market
701 N. Broad
Middletown, DE 19709
Join us at the Dutch Country Farmer's Market every Friday and Saturday from 10 a.m. to 2 p.m. starting March 11 until March 26. Volunteers will be distributing PKD information and collecting donations in support of the PKD Foundation.
Delaware Walk for PKD
Thank you to all who joined us for the 2015 Delaware Walk for PKD!
We had a great time connecting with everyone! Check out some of our favorite memories from the Walk here.
Save the date!
Sept. 17, 2016
Glasgow Park, Pavilion 1
If you are interested in helping out with the Delaware Walk, conact Erin at email@example.com.
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Latest Webinar Wednesday
Total Kidney Volume (TKV) is a key biomarker for PKD clinical studies. Learn exactly what it means, how it is calculated and why it is an important tool for the development of new therapies for the treatment of PKD.
Learn more about Webinar Wednesdays or watch previous webinars here.
Latest National Webinar
Presented by: David Baron, Ph.D., PKD Foundation CSO
Why does a drug therapy take so long to find? Hear from PKD Foundation Chief Scientific Officer David Baron, Ph.D. as he uses his decades of experience in drug development to explain the process as it relates to PKD.
Watch previous webinars here.
PKD Discussion forums provide a place for patients, family and friends to make connections, ask questions and share stories and experiences.