APPLY NOW
Do you have hypophosphatasia or are you close to someone who does? Do you want to connect with other teens going through similar experiences, raise awareness, and compete in fun challenges to win prizes?
The Soft Bones Teen Advisory Council (TAC) is a support and advocacy group for teen patients or teens with loved ones with hypophosphatasia. Meetings are held approximately once a month and are low commitment.
Living with HPP can impact every aspect of one’s life - not only can the disease result in more frequent injuries or doctor’s appointments, but it can pose a hindrance to daily activities such as playing sports, completing homework assignments, or hanging out with friends. It can be tough to find support and understanding from those who cannot relate to having the disease. That's why we created the TAC - to foster a community for teens to connect and share their experiences.
In addition to being a forum for discussion, the TAC provides a platform for teens to speak up about HPP to the broader community. Teens who have first-hand experience with HPP are in the best position to advocate for the disease. Rather than leave it to the adults, teens can directly reach out to local politicians to garner federal support, or fundraise and spread awareness within their schools and communities. Our goal is to empower teens with HPP to raise their voices about a rare disease that does not get enough attention.
Last but not least, we want the TAC to be an enjoyable and worthwhile experience for members of the team. From writing blog posts, to communicating with local politicians, to participating in social media challenges, there are numerous ways for you to get involved and contribute your unique talents. Apply now to be on the team!
Some ideas in the works, for ways that members can contribute to the program:
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Running social media accounts on Instagram and Twitter to spread awareness about HPP, with story-takeovers by TAC members
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Competing in social media fundraiser and content challenges on Instagram, Tik Tok, and Youtube
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Writing blog posts
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Creating a podcast
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Drafting policy proposals and meeting with local politicians to advocate for HPP funding
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Organizing fundraising events such as bake-sales, walks, and raffles
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...And many more!
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