Living with NF2: Abby’s Story of Brain Tumors, College & Accessibility Advocacy
Patient Abby Loden contributed this post. She lives in Mississippi and does disability and NF2-related volunteer advocacy work.
Gregg Erickson: My Perspective as a Neurofibromatosis Parent and Advocate
Gregg is a parent of a child with NF who has not only helped his own child but the NF organization as a whole.
Hi, my name is Emily R. Adkins and I have NF1
I’m sharing my story of never letting anyone or NF stopping me from my dreams and I hope more people with NF and other health and learning issues don’t let anything stop them for achieving their dreams.
Assistant Manager Inspires Dunedin High Baseball Team
Tyler, or "Tyno" as he's known around Dunedin High School, is an assistant manager for the Dunedin Falcons. He was born with neurofibromatosis, a genetic disorder that causes tumors to form on nerve tissue. Last month, he underwent surgery for a brain tumor.
Buono Receives DoD Grant to Study Mobile Phone Application for NF1
Dr. Frank Buono of Yale Psychiatry has been awarded a 3-year grant from the Department of Defense to evaluate whether a mobile phone application can reduce pain in adults with NF1.
Michigan Governor's Fitness Award Finalist
Michigan Governor's Fitness Award Finalist - Gregory Barnier with NF2
A Center of Excellence & Hope for NF Patients
Dr. Listernick will receive the coveted 2019 Advocate of Hope Award on Sunday, April 7th, 2019 at Chicago’s 2nd annual NF Hope Concert.
Living with the anxiety of having a child with NF
A letter written by Jessica Jemente about having a child with NF and the anxieties that come along with it.
Take a deep breath & have faith that everything will be ok
A mother steps out of her comfort zone with the need to let go and share her emotions on Facebook of her daughter's journey of living with NF.
Gus and His Make-A-Wish Trip To Hawaii
The Ericksons were visited by two Make-A-Wish volunteers—“wish makers”—who came to their home to interview Gus to see what his wish would be.
Therapy Dogs Bring Smiles and Laughter
The furry friends of the Sit Means Sit & Go Team brought nothing but joy and happy memories to the Boardman, OH walk.
Living with NF1: Jeff Colatruglio
My name is Jeff Colatruglio, I am 32 years old and this is my life.
People shouldn’t let anything hold them back
Losing a leg has not stopped 16-year-old Melody Walker from achieving any of her goals.
Michelle Hirsch Donovan: Taking Control of NF
Riley has completed seven Coast to the Cure NF Bike Rides and has personally raised nearly $112,000 for NFNE.
NF NE director named MNN award finalist
The Massachusetts Nonprofit Network recently announced Karen Peluso has been selected as a finalist for the 2018 Nonprofit Excellence Award in Leadership.
Cole Rutter: What I Can Do
The Inaugural Chicago NF Hope Concert presented the Paul Bodner Memorial Award to Cole Rutter. Read his acceptance speech.
Advocating for NF research — 30 years and counting
Karen Peluso became involved with the NF community when her daughter Mia underwent surgery to remove a very large and destructive plexiform tumor in her abdomen caused by NF1.
Refusing to let disease define you
A week before her 16th birthday, Catherine Richardson had her left arm amputated. Despite the challenges this has caused, she has not allowed NF to define her.
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.