Spreading Joy: Announcing the Awarding of Six Connor James Smith Patient Assistance Grants Totaling Over $15,000
In many cases, insurance covers the bare minimum for patients with rare genetic disorders like SCN8A, which leaves families footing the bill for necessary medical equipment, therapy devices, educational aids, medications, outpatient therapy costs, home and vehicle modifications, etc. The list is a mile long and the expenses add up quickly.
All of these out-of-pocket costs can create a financial burden that forces caregivers to make difficult choices about: choosing between life-saving medications or necessary medical equipment; choosing to sacrifice the physical health of their bodies because they cannot afford to remodel their bathroom to make it ADA accessible; choosing to pay for costly outpatient therapy instead of enjoying a family activity.
When I assumed the Executive Director position in July 2022, I had one particular idea that I desperately wanted to see come to fruition - a patient assistance grant for our SCN8A community. I know firsthand how many times caregivers are told no, so I wanted to create an avenue where we could say yes.
In early 2023, I received a phone call from a bereaved SCN8A mother, Krista Smith, in which she shared with me a vision she had to honor her late son’s legacy. The moment she began describing her ideas, I broke out in chills and tears streamed down my face because our visions aligned perfectly and I instantly knew this was meant to be.
Krista Smith, Connor’s mother, describes it best:
A promise made to a young boy at the end of his life started it all.
I am thrilled to announce that TCSF’s Connor James Smith Patient Assistance Grant went live on April 5, 2023, and within 24 hours we had our first application! Since the grant’s establishment, we have awarded 6 grants totaling over $15,000! These grants were awarded to patients in the USA, Israel, and Australia.
We’ve purchased a specialized toddler walker for a child desperately wanting to interact with his peers, an outdoor trampoline to help a child work on their physical therapy goals at home alongside his siblings, and a Wonderfold Wagon to help a child stay safe and be able to enjoy outings with her family. We also awarded funds to help cover out-of-pocket costs incurred for specialized therapy and high-priced medications, as well as covering a portion of burial costs for two of our SCN8A Angels who gained their wings this year.
When establishing the grant program for families, we had one primary goal in mind: to make the process easy for everyone. We understand the mounds of paperwork and lengthy applications families are required to complete on an ongoing basis and we wanted to make the process as seamless and quick as possible for them, helping to relieve some of their financial stress.
This grant is not based on financial need and is open to all SCN8A families around the world. Let us continue to honor Connor’s legacy of living life joyously by helping your family!