Joy Aldrich, CMT Advocacy Director, joined HNF in February 2015 to focus on the growth of HNF’s online patient support community. Joy and her husband, Toby, live in Seattle, WA, with their beloved yellow lab, Charley, and adopted chocolate lab, Tobydog (he came with that name!). While food service distribution was her career; finding a treatment for CMT, traveling, and cooking are her passions.
Joy was diagnosed with CMT as a teenager, after years of trips, falls, and sprained ankles. Her mom and brother were also diagnosed with CMT at that time. Years went by before Joy noticed the more rapid progression of CMT symptoms and pursued a genetic diagnosis, which was confirmed as CMT1A.
After her genetic diagnosis, Joy connected with HNF for advice on AFOs and a letter writing campaign to tell family and friends about her diagnosis. Since then, Joy has participated in HNF’s CMT Awareness month video campaign, hosted fundraisers in the Seattle area, moderated the Inspire CMT online support and discussion community, and helped plan and organize this Summit.
HNF has invited Joy to join the panel discussion “Genotype and Phenotype: Managing Symptoms, The Role of Researchers/Clinicians/HCP.”
Let’s learn more about Joy:
HNF: Why did you choose your particular topic for the Summit?
Joy:
I’m intrigued by the vast differences in how CMT affects different people in different ways, even within the same type of CMT. For example, my brother has hip dysplasia and very arthritic-looking hands, while I have terrible feet/ankles and have to wear AFOs to correct drop-foot.
Most recently, I’ve become an advocate for getting word out that CMT nerve damage can cause respiratory issues. That makes CMT terminal and I hope this will further motivate researchers, clinicians, and industry to find treatments or a cure for this awful disease.
HNF: How has CMT affected your life?
Joy:
Growing up, it was just something I had to deal with and make excuses for. I never told anyone about my CMT until I was 43 when I had to start wearing AFOs. I had to use a scooter to get around Disneyland when we took my nieces there two years ago, and it was really hard for me to let them see me like that. Recently, my mom passed away due to respiratory failure secondary to CMT1A and I really miss her!
On a positive note, CMT has lead me to HNF, and an amazing community of people who GET it. I truly feel empowered by the work that I do for HNF and this Summit, and by helping people deal with CMT issues in the Inspire online support and discussion community.
HNF: What do you hope attendees take away from the Summit?
Joy:
Empowerment! I hope that CMT patients walk away from the Summit feeling stronger, more informed, and ready to advocate for themselves and CMT. I hope they’ll get involved in the Inspire community, HNF Facebook, GRIN, CMTConnect, and Centers of Excellence. I hope researchers, clinicians, and industry participants will walk away knowing how CMT affects lives. After meeting patients face to face and hearing about their challenges, I hope they will be even more motivated to find a treatment or cure for CMT.
Be sure to connect with Joy in HNF’s Inspire Community here: https://www.inspire.com
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