{"id":59175,"date":"2020-08-28T12:22:26","date_gmt":"2020-08-28T16:22:26","guid":{"rendered":"https:\/\/rarediseases.org\/head-of-the-herd-deb-ayres-president-the-avalon-foundation\/"},"modified":"2020-08-28T12:22:26","modified_gmt":"2020-08-28T16:22:26","slug":"head-of-the-herd-deb-ayres-president-the-avalon-foundation","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/head-of-the-herd-deb-ayres-president-the-avalon-foundation\/","title":{"rendered":"Head of the Herd: Deb Ayres, President, The Avalon Foundation"},"content":{"rendered":"

At the Head of the Herd is…\u00a0<\/strong>Deb Ayres,\u00a0President,\u00a0The Avalon Foundation<\/a>.<\/p>\n

Deb advocates for…\u00a0<\/strong>patients with pediatric hypophosphatasia\u00a0(HPP)\u00a0and their families.<\/p>\n

Deb is located in…\u00a0<\/strong>Toledo, Ohio.<\/p>\n

How\u00a0Deb got here…<\/strong>\u00a0When my daughter Avalon\u00a0(\u201cAvie\u201d)\u00a0was ten years old, she started treatment for HPP\u00a0and it was really challenging for her. The treatment can be incredibly painful and have a lot of adverse effects, and you don\u2019t really see results for a couple of months, so compliance can be\u00a0really difficult, especially for kids.\u00a0I remember\u00a0Avie\u00a0saying to me \u201cI know how to live with my disease. I don\u2019t know how to live with this treatment.\u201d<\/p>\n

One of the things that gave\u00a0Avie\u00a0the courage to keep going and stick with the treatment was a \u201cPain Box\u201d that her grandma made for her. The box had\u00a0incentives in it as rewards for\u00a0Avie\u00a0when she completed\u00a0treatments\u00a0each week, and those incentives really helped to get her through treatment and get her to the point where\u00a0she\u00a0started\u00a0to see results. When she started\u00a0treatment\u00a0she was\u00a0using a wheelchair, then\u00a0all of\u00a0the\u00a0sudden she could get both feet off the ground a little bit, and then she could start to run a little bit.\u00a0After that, the motivation to keep going was there, but it\u2019s especially difficult at the beginning when you\u2019re going through so much and not seeing results yet.<\/p>\n

Once\u00a0Avie\u00a0got past all the pain to the point where she was seeing the results of the treatment, she\u00a0expressed to us,\u00a0\u201cI don\u2019t\u00a0know 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.\u201d\u00a0And that\u2019s how The Avalon Foundation got started, it was really her brainchild.<\/p>\n

How Deb\u2019s background helps her at The Avalon Foundation…\u00a0<\/strong><\/p>\n

I have a degree in psychology and I’m\u00a0also\u00a0a\u00a0Licensed Massage\u00a0Therapist\u00a0and Certified Life Coach;\u00a0so\u00a0I\u2019ve worked in mind-body\u00a0wellness for my entire professional career.\u00a0Because of my background, I\u00a0tend to\u00a0look at things more holistically.\u00a0I think it\u2019s so important, especially in the rare disease community, to recognize that psycho-emotional\u00a0support is an important piece to healing and wellness.<\/p>\n

A lot of people I\u2019ve met in the rare community are living in a place where they have the tools to get themselves through the day, but they\u2019re not thriving.\u00a0I think that\u00a0providing\u00a0complementary care and adequate support systems could\u00a0really improve this.\u00a0The Avalon Foundation aims to help provide some\u00a0valuable\u00a0peer-to-peer support for kids who are going through something really hard\u00a0(as well as professional guidance for families)\u00a0so that they can come out on the other side and thrive, rather than just survive.<\/p>\n

What\u00a0The\u00a0Avalon Foundation hopes to accomplish in the next year…\u00a0<\/strong><\/p>\n

We\u2019re hoping to grow our youth leadership program. There aren\u2019t\u00a0many\u00a0leadership programs available to kids before high school.\u00a0We\u00a0would love to expand\u00a0ours\u00a0nationally and start to fill that gap\u00a0in an effort to\u00a0positively influence our leaders of tomorrow.<\/p>\n

Where Deb sees The Avalon Foundation going long-term…<\/strong><\/p>\n

Currently we\u2019re focused on serving children in the HPP space specifically.\u00a0With future funding we hope to help other rare disease\u00a0communities as well.<\/p>\n

How\u00a0The Avalon Foundation\u00a0fundraises…<\/strong><\/p>\n

We fundraise mostly through donors and grants. In the future we\u2019re hoping to establish partnerships and sponsorships as well.\u00a0Our biggest donation thus far came from a local contracting company owned by the father of two girls on\u00a0our\u00a0Youth\u00a0Advisory\u00a0Board. The\u00a0kids 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\u2019 idea.<\/p>\n

Deb\u2019s do\u2019s and don\u2019ts for running an effective organization…<\/strong><\/p>\n

Do make sure everybody knows their \u201cwhy\u201d \u2013 why they\u2019re involved personally and why they\u2019re doing what they\u2019re doing \u2013 and make sure they stay connected to their \u201cwhy.\u201d This helps you lead by inspiration. Also, do find mentors. Reach out in the nonprofit world and understand that you can learn anything. Don\u2019t automatically negate any idea. Don\u2019t give up, even when you are discouraged. Don\u2019t be afraid to ask for help.<\/p>\n

How\u00a0Deb\u00a0remains\u00a0hopeful…<\/strong><\/p>\n

I\u00a0remain hopeful by looking at the kids involved in\u00a0our organization and looking at\u00a0the leadership that\u2019s\u00a0coming up in this next generation.\u00a0Young people are demonstrating to me a glimpse of what future leadership is going to look like.\u00a0I feel like kids\u00a0of\u00a0today look at the broken pieces on the floor and instead of wanting to rebuild them, they want to move past them.\u00a0As difficult as everything is,\u00a0I\u2019m excited at the time that I\u2019m living in.\u00a0We\u2019re\u00a0in the midst of\u00a0change, and change is messy, and change doesn\u2019t feel good, but change also means that better things are coming.<\/p>\n

Deb most often quotes…\u00a0<\/strong>The Dalai Lama<\/p>\n

If\u00a0Deb\u00a0found a cure for\u00a0HPP\u00a0and\u00a0The Avalon Foundation\u00a0had to find a new mission…<\/strong>:<\/p>\n

We would move onto the next rare disease with a painful medical treatment. That\u2019s what we hope to do in the future anyway; grow this program so that it\u2019s available to other rare disease communities as well.<\/p>\n

Deb\u2019s most recent read…\u00a0<\/strong>Neither Wolf nor Dog\u00a0<\/em>by Kent\u00a0Nerburn<\/p>\n

Some of Deb\u2019s hobbies…\u00a0<\/strong>I’ve started reading again. I love traveling, I can\u2019t wait to be able to do it again. I have quite the plant collection.\u00a0I love spending time with my family and our two Bernese Mountain Dogs. We love to explore parks and walk.\u00a0I don\u2019t have a lot of time to cook, but when I do have the time,\u00a0I really enjoy it.<\/p>\n

\"\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

At the Head of the Herd is…\u00a0Deb Ayres,\u00a0President,\u00a0The Avalon Foundation. Deb advocates for…\u00a0patients with pediatric hypophosphatasia\u00a0(HPP)\u00a0and their families. Deb is located in…\u00a0Toledo, Ohio. How\u00a0Deb got here…\u00a0When my daughter Avalon\u00a0(\u201cAvie\u201d)\u00a0was ten … <\/p>\n

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