Author: Sherry McLaughlin, NAF Support Group Leader
What do you do when you or a loved one has been diagnosed with a Rare Disease? You search for a physician who is knowledgeable, and you seek out others with the same condition. This is exactly why the Pacific Northwest Rare Disease Coalition hosts a Fair.
What is the Pacific Northwest Rare Disease Coalition Fair?
After a three-year Covid hiatus, the Fair was back with several hundred attendees being hosted by the Seattle Children’s Research Institute. The goal of the fair aims “To educate, engage and inspire our community about the importance of rare disease research”. Attendees of the summit represented patients and patient organizations, as well as pharma, biotech, researchers, and legislators.
NAF Exhibit at the Fair
Representing NAF at the event was Lori Shogren, NAF Director of Programs, as well as WWASG Support Group members Paula Wood, Diane Cross, and “Sherry” McLaughlin. Christina Rose Newell, the leader of our new Yeti Support Group (Northwest Washington) and a licensed mental health counselor with Ataxia was a discussion group leader for the newly formed Mental Health Task Force.
Also representing NAF was Christina’s young son, Boston, who was a featured speaker, although he is not much taller than the podium. Boston bravely spoke about having a Mom with Ataxia. It reminded all in attendance that Ataxia (and other rare conditions) affects families and not just individuals.
So what was our “takeaway” from this event? We left with a better understanding of how many people have rare diseases and how each of us can play a part in helping people along the diagnostic journey, helping to improve access to care, and accelerate development of new treatments.
When we put all our voices and energy together, we can have a voice that is heard. I thank the Pacific Northwest Coalition for welcoming us into their Rare family and I also thank NAF for supporting this alliance.