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Aug. 28, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Deb Ayres, President, The Avalon Foundation

Posted by Valaree DonFrancesco

At the Head of the Herd is… Deb Ayres, President, The Avalon Foundation.

Deb advocates for… patients with pediatric hypophosphatasia (HPP) and their families.

Deb is located in… Toledo, Ohio.

How Deb got here… When my daughter Avalon (“Avie”) was ten years old, she started treatment for HPP and it was really challenging for her. The treatment can be incredibly painful and have a lot of adverse effects, and you don’t really see results for a couple of months, so compliance can be really difficult, especially for kids. I remember Avie saying to me “I know how to live with my disease. I don’t know how to live with this treatment.”

One of the things that gave Avie the courage to keep going and stick with the treatment was a “Pain Box” that her grandma made for her. The box had incentives in it as rewards for Avie when she completed treatments each week, and those incentives really helped to get her through treatment and get her to the point where she started to see results. When she started treatment she was using a wheelchair, then all of the sudden she could get both feet off the ground a little bit, and then she could start to run a little bit. After that, the motivation to keep going was there, but it’s especially difficult at the beginning when you’re going through so much and not seeing results yet.

Once Avie got past all the pain to the point where she was seeing the results of the treatment, she expressed to us, “I don’t know how kids younger than me or without the support from family that I have would do this. I want to do this for every kid that starts this treatment.” And that’s how The Avalon Foundation got started, it was really her brainchild.

How Deb’s background helps her at The Avalon Foundation… 

I have a degree in psychology and I’m also a Licensed Massage Therapist and Certified Life Coach; so I’ve worked in mind-body wellness for my entire professional career. Because of my background, I tend to look at things more holistically. I think it’s so important, especially in the rare disease community, to recognize that psycho-emotional support is an important piece to healing and wellness.

A lot of people I’ve met in the rare community are living in a place where they have the tools to get themselves through the day, but they’re not thriving. I think that providing complementary care and adequate support systems could really improve this. The Avalon Foundation aims to help provide some valuable peer-to-peer support for kids who are going through something really hard (as well as professional guidance for families) so that they can come out on the other side and thrive, rather than just survive.

What The Avalon Foundation hopes to accomplish in the next year… 

We’re hoping to grow our youth leadership program. There aren’t many leadership programs available to kids before high school. We would love to expand ours nationally and start to fill that gap in an effort to positively influence our leaders of tomorrow.

Where Deb sees The Avalon Foundation going long-term…

Currently we’re focused on serving children in the HPP space specifically. With future funding we hope to help other rare disease communities as well.

How The Avalon Foundation fundraises…

We fundraise mostly through donors and grants. In the future we’re hoping to establish partnerships and sponsorships as well. Our biggest donation thus far came from a local contracting company owned by the father of two girls on our Youth Advisory Board. The kids had the idea to do a home build for The Avalon Foundation, and it was really exciting to have our biggest donation come from something that was the kids’ idea.

Deb’s do’s and don’ts for running an effective organization…

Do make sure everybody knows their “why” – why they’re involved personally and why they’re doing what they’re doing – and make sure they stay connected to their “why.” This helps you lead by inspiration. Also, do find mentors. Reach out in the nonprofit world and understand that you can learn anything. Don’t automatically negate any idea. Don’t give up, even when you are discouraged. Don’t be afraid to ask for help.

How Deb remains hopeful…

I remain hopeful by looking at the kids involved in our organization and looking at the leadership that’s coming up in this next generation. Young people are demonstrating to me a glimpse of what future leadership is going to look like. I feel like kids of today look at the broken pieces on the floor and instead of wanting to rebuild them, they want to move past them. As difficult as everything is, I’m excited at the time that I’m living in. We’re in the midst of change, and change is messy, and change doesn’t feel good, but change also means that better things are coming.

Deb most often quotes… The Dalai Lama

If Deb found a cure for HPP and The Avalon Foundation had to find a new mission…:

We would move onto the next rare disease with a painful medical treatment. That’s what we hope to do in the future anyway; grow this program so that it’s available to other rare disease communities as well.

Deb’s most recent read… Neither Wolf nor Dog by Kent Nerburn

Some of Deb’s hobbies… I’ve started reading again. I love traveling, I can’t wait to be able to do it again. I have quite the plant collection. I love spending time with my family and our two Bernese Mountain Dogs. We love to explore parks and walk. I don’t have a lot of time to cook, but when I do have the time, I really enjoy it.