People Spotlight

Miss Teen Minnesota hopes to inspire others

Grace Grell, who has neurofibromatosis type 1, hopes to inspire others as Miss Teen Minnesota.

Parents raise 10k for son’s genetic disorder

When Belmont residents Amy and Scot DeDeo learned their son, Nat, had Neurofibromatosis, they didn’t waste any time.

Special day for 9-year-old Maddox Smith

Getting the chance to be a Kid Captain this season means a lot to Maddox and his family. The Kid Captain program started in 2009 as a way to honor pediatric patients and celebrate their stories.

Coach selects teen with brain tumors as manager

Ryan Hauck, who has three inoperable brain tumors, is living out his dream to play basketball thanks to a supportive coach and teammates.

People helping people

In 2013, Jenn Krawchyk, the mother of a young boy, Kyle, with NF1, from Boardman, OH, called the NF Network looking for a way to connect with people with NF in her area and raise funds for NF research. Four years later I find myself in Boardman Park, early on a Saturday morning with a gentleman named “Ron Maxwell, like the coffee.”

NF mother on a mission

Melanie Leach raises NF awareness by organizing walks and bake sales in addition to traveling to D.C. each year to meet congressional staff.

Contributing to health care reform

Beverly Oberlander, a patient advocate for Neurofibromatosis California, recently participated in a roundtable discussion on health care reform with U.S. Representative Pete Aguilar.

Racing for a cure

Ashley Ihry decided to raise awareness for neurofibromatosis by dusting off her running shoes.

Family helps Pennsylvania woman raise thousands

Yonairis Smith raised more than $2,000 with the help of a team of 20 family members and friends.

One woman’s passionate pursuit to cure NF

Tricia Ratell has worked tirelessly to raise NF awareness and funds to combat the disorder.

UAB clinic provides support for NF families

The NF Clinic at the University of Alabama Birmingham provides diagnosis, genetic testing and counseling, long term follow-up, and management of NF-related problems.


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