Meet Our Fundraisers > Lincoln's Legacy
Since his diagnosis in the spring of 2009, the Wheelock and Gambaiana families have joined forces with others from across the globe to enhance awarneness and generate resources to accelerate an effective treatment and eventual cure for FOP in honor of Lincoln Wheelock.
This journey has filled our lives with the emotional rollercoaster of having a child with a rare, catastrophic condition and experiencing the disease progression and resulting loss of mobility. We've also experienced the recent tremendous advances in FOP research, including multiple clinical trials, an explosion in the number of venues conducting research, and other progress that provides us hope for the future.
The extraordinary support received from family and friends over the past several years has touched our hearts in so many ways. This support consists of thoughts, well-wishes, encouragement, acts of kindness, prayers and gifts of financial resources.
The year 2019 marks the 11th consecutive year that our families have been deeply engaged in the process of raising support for FOP research. Since our first family event in the summer of 2009, our donations have been channeled to the IFOPA and the FOP Research Laboratory at the University of Pennsylvania. That figure represents net cash -- we've been able to keep our fundraising costs to bare minimums due to additional generosity by many. This remarkable record of support is a testament to the depth of compassion and generosity of our supporters.
In July of 2015, Lincoln suffered his first major flare up after several years of minimal episodes. The progressive nature of this disease provides a harsh reminder of why it is described as the most catastrophic orthopedic condition known to medicine.
And the fall of 2015, Lincoln enrolled as the first patient in Clementia's Phase II pediatric clinical trial of Palovarotene, an oral compound and retinoic acid receptor. The compound has been shown to block bone growth in mouse models of FOP. Since then, Lincoln has made nine trips to the clinical trial site in San Francisco, where assessment, imaging and range-of-motion testing are performed. He has received the medicine in a number of increments and remains an active particiapnt in the trial. We remain optimitistic and are grateful that his progress is possible through the work of many, including the dedicated scientists and researchers working daily to solve the FOP puzzle and those who contribute with financial resources. In June of 2018, we moved Lincoln to Mayo Clinic, where he continues in Phase III of the trial. Mayo is also a host site for a separate clinical trial, currently available to adults only, but the future possibilities and ease of travel made the decision a positive one.
Because of your generosity, we are closer to finding a treatment for FOP and to giving Lincoln and other FOP kids the chance of a more independent future.
FOP research is made possible by the ongoing generous contributions of family and friends of patients. Please consider making a generous gift by doing the following:
- A check to IFOPA. The check can be mailed to me and I will forward it to the correct person.
- Contribute online. Go to https://ifopa.salsalabs.org/teamcurefop/p/lincolnslegacy/index.html
All donations will go directly to the IFOPA to help fund research and are tax deductible. The IFOPA is a 501(c)(3) non profit organization. If your company has a matching program, please contact Lincoln’s grandmother, Robin at 515-480-1674 or firstname.lastname@example.org.
For more information on FOP and Lincoln, please check out the IFOPA website, www.ifopa.org and Lincoln’s Facebook page (Lincoln’s Legacy - Cure for FOP).
Thank you for supporting this most worthwhile cause….
Trisha and Lee Wheelock