Yesterday, I went to the post office to mail two donations. The result of generosity from my community and the fruits of back to back fundraisers. The first was a wild night at Chili Head BBQ in West Bridgewater. Outrageous entrees, decadent beer and inspired music met the crowd ready for a fun night out. The second was a packed house at Crispi’s Italian Restaurant in Bridgewater. Good friends, family and community members buying AFTD wristbands from Noah, hoping to win a raffle prize and enjoying authentic Italian cuisine. Both events were a celebration, my community coming out to learn more and show support. Symbolic of what all caregivers need.
It was very important that the campaign hosted two fundraisers. The first benefitted the Frontotemporal Disorders Unit at Massachusetts General Hospital, the second The Association for Frontotemporal Degeneration. Sending out two donations, supporting both entities, was symbolic of what a family needs to navigate rare disease: A Trifecta.
For me, that trifecta encompassed an innovative medical facility, my rare disease organization, and my community. One piece is never enough. In order to navigate the maze of information, emotions, and logistics of rare disease care, each element must be in place. Many families need more help putting these pieces together.
Families need to know that rare disease organizations and caregiver networks do exist. They need to understand the importance of being with a medical team that understands the specific nuances of their loved one’s condition. Community members need to know that they don’t have to stay away, everyone can do something.
That is what this campaign is all about. Raising awareness. Sharing our stories. Making the path a little easier for the next weary travelers. The past 36 days have been an incredible tribute to my husband’s life, the power of our story, and the strength in human connections. My friends, family and colleagues have astounded me with their passion, commitment and enthusiasm for my cause. Local businesses have overwhelmed me with their generosity. Strangers have reached out to me to say “That’s my story, too.”
As I was parking the car before going into the fundraiser last Tuesday night, I turned around to Noah in the backseat and asked him “Why are we doing all of this? Do you know what this fundraiser is for?” He replied “So we can give money to a scientist who can fix people’s brains with FTD.”
Today, Noah sees the tangible. The money going into jars and envelopes. One day, I hope he sees the bigger picture. I hope he sees how we kept going, not only for ourselves, but for all the other families who needed to hear that Love Is Out There.
The website has had over 12,000 views. The Ellen Show has received over 1,000 individual requests. I can’t quantify the number of connections. I couldn’t have anticipated the momentum that would build. Today is the last day of our 36 day campaign. But, it feels like just the beginning. Keep an eye out to see where the butterfly will land next.