My evening at the Tolvaptan Extravaganza Gala
If someone would have told me when I was 19 and on death’s doorstep because of PKD, that in 13 years I would share my triumph over adversity by attending the launch of the first treatment for PKD in Canada – my family and I would have been in utter disbelief.
Since my diagnosis, I had hoped to live to see the day that a treatment would be found for PKD so others would not have to suffer from this disease like my family and I have. I am grateful to have survived to witness this glorious milestone, and incredibly honored to be the keynote speaker at the Tolvaptan Extravaganza Gala in Montreal, Quebec on May 4, 2015. Tolvaptan was approved in Canada as a treatment for autosomal dominant polycystic kidney disease (ADPKD) in February 2015.
As an international ambassador for PKD, I was invited to share my compelling personal journey to help paint a picture of life with PKD. With my dedication to the cause and positive voice for patients and families suffering from PKD, it was a privilege to be asked to represent the PKD community.
Below is the finale of my speech that I presented on the historic evening:
“This work is fundamental. It is an amazing honor to be able to share my voyage with PKD, but I am just one of the 12.5 million people worldwide living with this. There are the patients with such enlarged kidneys that they look pregnant. The children that do not survive much past birth because they have ARPKD. The caregivers that tirelessly battle this disease right beside the patients. The generations after generations of people fighting PKD and losing loved ones.
Coincidentally, today is my mom’s 59th birthday. She is the oldest in our immediate family to survive this disease. I am overwhelmed with emotion to be celebrating the launch of the first treatment for PKD in Canada on my mom’s birthday. I hope my late grandmother; aunt and everyone else who has died from PKD are having a big celebration like we are today! I hope I am making them proud. I know I am proud to represent the PKD community today.
My transplant has given me the opportunity to live life to its fullest with every cell of my being. I feel that tolvaptan will do the same thing for patients. You could call transplant my temporary treatment; however it won’t last forever like the positive effects tolvaptan will have on patients. An important component of this treatment for PKD is that it gives hope, which I have learned firsthand is more powerful than anything! Hope reenergizes us, gives us something to look forward to, something to cling onto, something to believe in.
My wish is being fulfilled that others won’t have to suffer the full effects from PKD like my family and I have, where dialysis and transplantation are the only treatment. Lives will change for the better thanks to the release of tolvaptan in Canada. Tolvaptan is turning what we thought was seemingly impossible into the possible. Otsuka’s release of the first treatment for PKD in Canada is the hope leading towards a cure for PKD.”
As I exited the stage, “Somewhere Over the Rainbow,” a special song for my mom and me, filled the room. The delightful Allison Rosenthal, General Manager of Otsuka Canada, greeted me with a bouquet of flowers and shared with the audience endearing words of support that my mom and family are proud of me. It was encouraging and inspiring to meet such wonderful, dedicated, kind-hearted individuals who are researching and working hard to help change our lives for the better. I held the entire PKD community close at heart. It was an evening I will forever treasure.
While tolvaptan has yet to be approved in the United States, approval in Canada (as well as Japan and recently in Europe) is a step forward in the PKD community as a whole. My hope is that approval in the U.S. is not too far away, and that this shows a vote of confidence by other countries.
Help find treatments like tolvaptan by getting involved in clinical studies
The only way to find treatments like tolvaptan is for people diagnosed with PKD to take part in clinical studies. There are many studies currently testing potential therapies and they need participants.
Thank you, Valen, for continuing the fight to END PKD with your presence, blogs, encouragement and VOICE. You are an amazing young woman with the ability to change the world!!!!
Wow! Thank you so very much for your incredibly sweet sentiments of support and encouragement! It fuels my passion to keep sharing and using my voice. 🙂 Thank you! 🙂
You are a inspiration to all of us. It is a tough disease and I feel the message needs to get across to everyone. Not many physicians know about PKD. All the walks and runs need national media attention! You are our Princess!
Thank you for all you do for the PKD community.
Aww, Bambi you are so kind. Thank you for sharing your sweet thoughts. It is an honor to be able to help the PKD community. This is a tough disease and I completely agree that the message needs to get across to everyone. That is why I continue to share my journey and try and have it reach as many people as possible. I would love for us to get national media attention. It has been a goal of mine to make that happen some day. Hugs!
Dear Valen,
You are an incredibly strong and inspirational person. We are so grateful to you for sharing your personal journey with us and helping us to learn first hand from your and your family’s experiences. We will continue to work hard for the PKD Community and cherish the opportunity that we had to meet you.
I hope our paths cross again soon. In fact, I keep the photograph of the two of us in my office and look at it regularly when I need inspiration and courage.
Here’s to you!!
Allison
Dear Allison,
You sure have brightened my day! Thank you! Words can’t justify how much your incredibly kind sentiments and support means to me. Sharing my story at the gala was one of the most special evenings of my life. I would love if our paths would cross again. I hope we can make that happen.
So ironic that you say that about our photo, because I do the same thing. It is on my desk and I look at it often for inspiration and to relive that evening. When I first saw the photo of you and I right after I walked off stage, it warmed my heart and filled it with such happiness. That photo takes me right back to that evening and the emotions I had after sharing my story.
It was such a joy meeting you and talking at the event. I greatly appreciate all of the work that you do and your dedication to helping the PKD Community! I’m grateful to have met you and can’t thank you enough for including me in your special event.
-Valen
Valen,
As a current participant in the Tolvaptan study in Arizona, I am delighted to be a part of the clinical trial. Although the side effects (dry mouth,extreme thirst,and frequent nighttime urination) have been bothersome, I intend to stay the course for myself,my sons,my grandchildren, and all others who will benefit. It is through these trials that scientists will be able to perfect non-invasive treatments for our future with fewer side effects.
Thank you so much for sharing and THANK YOU for being a part of the Tolvaptan study and helping to change the course of PKD in a positive way for future PKD patients. 🙂 Big hugs!
Thank you for sharing your speech on such an important event, Valen! Your words are always an inspiration to all. Your family must be, indeed, so proud of you:))
I just did a little research and read that Mexico is on the last stage to approve JINARC!
Thank you for all you do!!
You are so welcome! 🙂 Thank you for your sweet words of support! Great news about Mexico.
Valen – I have PKD and I really, really do understand. I understand your enthusiasm , you have had a transplant unlike me. Are you certain of the efficacy of Tolvaptan? Do you really believe that a “miracle drug” is being denied by the FDA? Wouldn’t the FDA and nephrologist so be telling everyone that there finally is something to halt the growth of cysts? I’m very suspicious that the majority of the academic medical community has been so silent concerning Tolvaptan. Further, what about the $3,000/month cost? There are some issues here which need answers.
Eugenia,
I do believe that tolvaptan is an effective drug in slowing the growth of cysts, and its approval in Canada (as well as Japan and Europe) is a milestone as the first of any such treatment for adults with ADPKD. I can’t speak in depth (nor on behalf of the FDA or Otsuka) about the status of tolvaptan in the United States, but I can clarify that it has not been denied – the FDA has requested additional information to review before they will approve or deny it as a drug. In fact, a phase 3b clinical trial is underway right now with Otsuka after working with the FDA to agree on what is required. My intent with this post was to share the hope that this represents. If you have other questions you can read the press release
http://otsukacanada.com/about/news/news-detail/2015/02/26/first-ever-treatment-approved-in-canada-for-adults-living-with-adpkd-a-life-threatening-kidney-disease
(which has contact information for further questions). Thank you for your comments!
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Thank you very much for this kind comment. Makes me happy to hear that my writing style helped encourage you to read this blog post. I am glad that you enjoyed this article and hope you continue to enjoy my blog entries. Take care!
Hello Valen Keefer, can you please send me a good doctor you recommend, for attending me in Canada, I have PKD, Im 39 years old, and would like to visit your country for third time, I am from Mexico
Hi Alberto,
If I understood correctly, you are looking for a doctor in Canada? If so, I suggest you connect with the PKD Foundation of Canada for a recommendation. Their website is http://www.endpkd.ca and their email is endpkd@endpkd.ca and their phone is 1-877-410-1741. Please let me know if there is anything else I can help with. Wishing you all the best!