Friedreich’s Ataxia - Adventure Day
One of the many perks of what we do is that we have the privilege of interacting with some incredible people and their organizations. One of these people is Jean Walsh, and while she used to work with us here at Project Adventure for 15 years, she now has her or organization that aligns itself with a similar foundation of building healthy communities through the development of social and emotional learning skills.
My organization, Spark Hope, seeks to build social-emotional health and community among people and their loved ones with rare diseases. Friedreich's Ataxia (FA) is a rare disease. There are about 5,000 people nationally with FA and about 15,000 worldwide. About 1 in 10 people or an estimated 25-30 million in the US have a rare disease (source). So, while each disease is uncommon, having a rare disease isn't. Spark Hope is working to help people understand and actualize that rare disease doesn't equal misery. People with rare diseases can and do thrive.
I am just now refocusing on not just FA, but all rare diseases. I have seen what the FA Adventure Days do for the FA community and would love to bring Adventure Days and other programming to other rare diseases. We just finished our 7th year of FA Adventure Days. The patient organization that I volunteer for is the Friedreich's Ataxia Research Alliance (FARA) which is laser-focused on finding cures and treatments for FA. When I was diagnosed in 1981, I was 19, I was told no cure, no treatment, you will likely be dead by 35. They also said take some vitamin E, it might help. Now, thanks to FARA, there are a lot of treatments in the works.
After working with Project Adventure, I saw how powerful their programs are at building connections and enabling people to do far more than they think they are capable of and I thought it could be a great experience for the people in my FA community in 2012. So, that's when we did our first FA Adventure Day. It was beyond amazing. We connected, deepened connections, accomplished things we thought we couldn't, and just had fun. I couldn't be more grateful to Project Adventure for letting us make this happen! One of our 4x participants wrote this about last year's day. She articulates the meaning of the day so well.
We are so grateful for all the work we do with our community members and look forward to continuing it with more schools and organizations.