Six years ago, our family boarded a high speed train and we were transported to a destination we did not choose. Our son Matt had just turned 30 and he was diagnosed with ALS, the “mother-of-all terminal illnesses”. We were unprepared for this trip. We had no itinerary, no luggage, no roadmaps, no idea where or how long we would stay at “Destination ALS”. This relentless ALS train never misses it’s schedule. It arrives at the same destination every day. When the doors open, on average, 16 -20 U.S. families get off the train, totally unprepared for what lies ahead.
Over the years I’ve learned a lot about the disease and about the people living alongside us in the ALS Community. We are all scrambling, digging deep into our “baggage”, to find the tools to help navigate a complex and scary landscape while we focus on caring for our loved ones living with ALS, surrounding them with love, care, and making joyful memories with family and friends.
Traveling this journey with our family are some extraordinary people.
- People who are managing, working for and or supporting organizations/labs dedicated finding a therapy for ALS (Research).
- People dedicating their lives to changing the way government(s) and sponsors(pharma) accelerate therapies for ALS. (Regulatory).
- People who are dedicating their lives to creating awareness and/or friction in the ALS community; challenging the filters through which ALS treatments, care and research have been viewed for over a century (Advocacy).
- People managing, working for and/or supporting organizations that provide care for patients and caregivers as we navigate the many challenges associated with the deterioration of our loved ones (Care)
Matt set the bar high for our family’s advocacy work and we are richer for the experience. Our family has lobbied elected representatives, walking/rolling miles and miles under the capitol building in DC. We actively participated in “how a bill becomes a law” with the Right To Try law. We meet with leaders at the FDA sharing our recommendations to increase the speed in which therapies are made available to the ALS community. We’ve texted, emailed, tweeted and protested. We’ve raised funds for care, research and advocacy by running, pub-crawling, biking, zumba’ing, ice-dumping, polar plunging and volunteering ourselves to assist on the sidelines of many other events. Despite our efforts, I always feel like we aren’t doing enough.
When I can, I muster up the courage to “greet the new arrivals on the ALS train when it pulls into the station”. I check the platform first for the moms. I’ll never forget how lost and frightened I was in those first few months after Matt’s diagnosis. Six years in, I have some “lessons learned” to share. I think of Fred Rogers when he said “look for the helpers. You will always find people who are helping”. My goal is to connect the new arrivals with the helpers. My goal is to help the helpers who are changing the trajectory of this disease. My goal is to create a world where there is no longer a need for a train to stop at “destination ALS”.