OUR STORY
The Teen Advisory Council is a program through Soft Bones, an organization founded by Deborah Fowler. The TAC was created to provide teens with a support system and a platform to raise their voices.
Mrs. Fowler founded Soft Bones after her son was diagnosed with hypophosphasia at 18 months old. Seeking guidance and support, she turned to the internet but was unable to find any organization targeted to this cause. Thus, Mrs. Fowler created Soft Bones, to provide information, education, and support for people living with HPP as well as promote HPP research through fundraising and spreading awareness.
In addition to organizing the patient community around this orphan disease, Mrs. Fowler has visited Capitol Hill to raise awareness and educate lawmakers on the intricacies and challenges encountered by patients living with rare diseases. She currently works with the National Institutes of Health and the Social Security Administration to support research efforts and to ensure that patients are entitled to government benefits.
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Prior to founding a non-profit, Mrs. Fowler spent more than 10 years working in media as an award-winning television reporter and news anchor in major markets across the country. In 2003, she launched Original Media Concepts, a media relations firm specializing in media strategy and placement. In 2008, she brought her media prowess to Green Room Communications and brings her expertise to public relations strategic planning. She was elected to the Board of the Lakeland Hills YMCA and has been recognized as a Leading Woman Entrepreneur in New Jersey. In 2014, Mrs. Fowler was recognized by the Boy Scouts of America as Woman of the Year.
Meet Julia, TAC leader
Julia has a passion for storytelling on a local, national, and international level. She fosters that love through her classes at Syracuse University as a writing and journalism student. In her free time, Julia is an avid traveler, skier, seafood connoisseur, and thrill seeker. She is a passionate advocate and has worked with the Juvenile Diabetes Research Foundation since her type 1 diabetes diagnosis in 2008. Julia has years of experience from attending the JDRF Children’s Congress, founding the Central PA Teen Task Force, to living with a chronic illness for more than half of her life. She looks forward to connecting with teens through the TAC and using her skills to help Soft Bones succeed. Her future plans include traveling the world and completing her never-ending bucket list.