Thank you from WILLPower and Cure Sanfilippo
Dear Sharks,
It is difficult to find the words to express our gratitude for the support you have shown our family this season, but we will attempt to do so. You have exemplified WILLPower and rallied around us, raising over $1,100 for the Cure Sanfilippo Foundation in honor of our son, Will. It is with great joy that we can now tell you (as the news went public this past Friday) that your contributions are helping fund a clinical trial, expected to begin recruiting next month, which could result in a treatment for Sanfilippo Syndrome!
When your child is diagnosed with a rare, terminal disease, the initial despair you feel is overwhelming. It is the continued love and generosity of others that buoys us and renews our spirit. The more people that know about Sanfilippo Syndrome, the better we can fight it, and that gives us HOPE for Will and all children with this disease as we push the research community forward.
In addition to the support you have shown us as we work to raise the profile of Sanfilippo Syndrome, we want to further express the gratitude we have for the community of acceptance you have cultivated. Thank you for not only embracing Will, but also for helping build a strong support network for our daughter and Shark swimmer, Samantha. As she grows older and begins to understand more about Will’s condition, it means so much to know that she is surrounded by people who understand and care about our family’s situation. Thank you for that incredible gift.
When we first moved to Cypresswood, we had dreams of being part of a tight knit and caring community. Thank you for making those dreams come true!
With gratitude and WILLPower,
Tim, Valerie, Will, and Samantha Byers
To learn more about the upcoming clinical trial, go here: https://clinicaltrials.gov/
To learn more about Sanfilippo Syndrome and the Cure Sanfilippo Foundation, go here:
To follow our family’s story, you can find us on these social media platforms:
Facebook: https://www.
Instagram: @WILLPowerMPS
Twitter: @WILLPowerMPS
