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Liver Life to the Fullest

Welcome to our Road to a Cure fundraising campaign page!

Over the last few years both of our children have been diagnosed with a rare liver disease, PSC (primary sclerosing cholangitis). It is an incurable disease that typically leads to liver failure and the only current treatment is a liver transplant. 

Essentially the bile ducts inside and outside the liver become inflamed which leads to scarring, narrowing of the ducts and eventually blockages. This damages the liver which can potentially lead to liver failure and the need to have a transplant. If you want to learn more about this disease and the challenges in battling it, spend a few minutes watching this overview video, from PSC Partners.  

Thankfully, both of our kids’ health is currently relatively stable. However, they live with the uncertainty of when, how, and if the disease will progress further. 

Recently a number of people have asked how they can help and one of those ways is to contribute to research efforts to help find a cure for PSC. With the rarity of this disease, one of the biggest challenges in finding a cure is the funding of research. To this end, if you feel so led to help us fund efforts to find a cure, you can make a tax deductible contribution to PSC Partners on this page.

To encourage others to join us in this fight, we will match dollar for dollar any contribution made on this page (up to a total of $7,500) between now and October 29th, 2019 (which is PSC Awareness Day). If you have any questions related to making a contribution, reach out to PSC Partners at contactus@PSCpartners.com.

Click the Sponsor Me link below to help us reach our fundraising goal. 

If you are unable to contribute financially, there are other other ways you can help, including: 

  1. Sign up to be an organ donor. One of the biggest challenges facing PSC patients is the uncertainty of if or when a liver will be available when they get to the stage of care where this is needed. If you haven’t done so already, check the “DONOR” box on your next drivers license renewal form or sign up to be an organ donor by completing the form here: https://www.organdonor.gov/register.html

  2. Help us get the word out. As noted earlier, PSC is a very rare disease and one of the biggest challenges in battling it is making others aware of the disease and how they can help. To this end, if you feel so led, feel free to share this information with your circle of family and friends. We just ask that for confidentiality reasons, please don't share our children's names in spreading the word.

  3. Pray that our children’s health remains stable and they are cured of the disease. As important, pray that a cure can be found for this disease.  

Thank you for taking the time to read our story and providing any support you can. Most importantly, your thoughts and prayers are appreciated as we continue this journey.

Dean and Delaine

279%
  • Goal $7,500.00
  • Raised $20,935.38
Top Donations
  • Fidelity Charitable - $10,000.00
  • Randy & Jane Arhart - $2,000.00
  • Anonymous - $1,000.00
  • Thomas A Trotta - $500.00
  • Jeff & Maxine Leinen - $500.00
Sponsors
Donor Date Amount Message
Anonymous 11/14/2019 $1,000.00 "Liver Life to the Fullest!" in honor of Kelsey and Ryan Ferkinhoff.
Victor & Kathryn Wald 11/13/2019 $50.00
Fidelity Charitable 11/12/2019 $10,000.00 Ferkinhoff Family Gift Fund
Linsey Davis 11/3/2019 $50.00 Sending prayers for your family!!
The Gabbert family 11/2/2019 $100.00 Sharing our love and prayers for your good health and success in research.
View All


Patient
Registry

Patient Registry

Help researchers worldwide unlock the mysteries of primary sclerosing cholangitis (PSC). Complete your profile and join PSC Partners Seeking a Cure in advancing PSC research towards a cure. Your participation is important!


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