Name: Rachelle Dixon
Title: President and co-founder
Organization: HSAN1E Society
Disease focus: Hereditary sensory and autonomic neuropathy type 1E (HSAN1E) is an extremely rare hereditary neurological degenerative disease that shuts down many of the nerves and systems in the body. Affected individuals will experience a progressive inability to hear, walk, speak, or to comprehend simple tasks or conversations. Eventually the individual’s body will completely shut down, causing death in their late 40’s to early 50’s. HSAN1E is characterized by an impaired function of the sensory nervous system which presents itself in a triad of symptoms: hearing loss, behavioral changes (dementia), and peripheral neuropathy.
Headquarters: Tracy, California
How did you become involved in rare disease: I have had HSAN1E in my family for four generations. I don’t personally have it. Up until 2013 it was an undiagnosed disease in our family. My brother and sister started to show symptoms of the disease. My sister was referred to a genetic counselor and was diagnosed. My brother subsequently went and got the same test done.
Previous career: I’m a stay-at-home mom. Before that, I was a pre-school teacher.
Education: Attended college classes in child development.
Organization’s mandate: Our mission is to raise awareness for HSAN1E and to provide support for families with HSAN1E
Organization’s strategy: Our number one purpose is to be a support group. We focus a lot on being there for families, researching, and helping them get information from their doctor. Our family had no one to talk to and even our doctors didn’t have any answers for us. We have a support group so HSAN1E families can talk to other families. They can email or call us. It is a fatal disease and we’ve had some families who have lost loved ones and we are here to help and comfort them.
Funding strategy: We’re funded through families doing fundraisers. We have a couple of fundraisers throughout the year. We do a couple of Facebook fundraisers each year. We need to focus on this and figure out how to bring in more funds.
What’s changing at your organization in the next year: One of the big things we plan to do by the end of next year is to have a patient registry. I’ve been working hard on trying to find a platform that will work for us and benefit us. We’ve narrowed it down to a couple of choices and next year we hope to have it up and running.
Management philosophy: I wouldn’t ask anybody to do something I myself wouldn’t do or couldn’t do.
Guiding principles for running an effective organization: Communication, transparency, and honesty.
Best way to keep your organization relevant: Continuing to have a face out there in the rare disease space and the industry coming at it from all angles.
Why people like working with you: In regard to being a part of the organization, I’d say it’s their own drive to do good, help others, and honor an affected family member. I don’t think it’s “Hey, let’s work with Rachelle.”
Mentor: Within the rare disease space, my mentor is Nadia Bodkin. She’s helped me navigate my way through the rare disease space. She’s started the Rare Advocacy Movement (RAM), which is a group of rare disease advocates that collaborate together. Some of the advocates are more seasoned in the rare disease space and some are fairly new, like me. We just help each other out. You know they are in it for the right reasons and they are willing to give advice and direct you to help out.
On the Job
What inspires you: The families that I work with. They are hopeful for treatment. They keep wanting answers. They keep wanting to help out their loved ones.
What makes you hopeful: That someday there will be a treatment.
Best organization decision: I think our best decision was getting a really good web designer. We’re pretty proud of our website. It’s the face of our organization. It’s the first thing people will see if they are researching the symptoms of the disease or searching for the disease.
Hardest lesson learned: Ask more questions before I say yes to something. I used to say “yes” to things without understanding what I’m saying “yes” to. In my quest to raise awareness or to get our name out there, I quickly said I’d do this or be a part of this and found myself sticky situations because of it.
Toughest organization decision: So far, I think picking a registry platform that works best for us has been the toughest decision.
Biggest missed opportunity: The fact that we waited so long to start an organization or start looking for other families. If we had looked years ago, we could have been more established as an organization by now.
Like best about the job: Knowing that I have provided a certain amount of comfort to a family by them knowing I am here, and that they can talk to me. That’s something my family didn’t have.
Like least about the job: When I find out we’ve lost someone from one of our families.
Pet peeve: Personal, my biggest pet peeve is the noises people make when they eat. In the rare disease world, I think the adults of rare diseases get overlooked.
First choice for a new career: I’d be a detective.
Most influential book: I have favorite authors. I just bought the new John Grisham and Jodi Picoult books.
Favorite movie: Any of the ‘80s classics
Favorite music: Anything but rap
Favorite food: Italian
Guilty pleasure: True crime stories
Favorite way to spend free time: Hanging out with family
October 24, 2018