Alexandra Ehrhart, left, and Michele Holbrook

VB Gives Back

to

Penny's Flight Foundation

Life with Neurofibromatosis

When Alexandra Ehrhart hits the pavement for the New York City Marathon in November, she'll be doing so in support of our VB Gives Back partner, Penny's Flight. Like so many others we've met, she's "spreading wings" to raise awareness and funds for neurofibromatosis (NF). But her connection to the cause is more intimate than most: Ehrhart, 25, is battling the disease herself.

Michele Holbrook, 58, is an NF Warrior, too, who uses her personal story to get the word out about the little-known genetic disorder. She's an athlete, like Ehrhart, who runs and rows for the cause. But unlike Ehrhart, who was diagnosed as a toddler after her parents noticed she wasn't growing the same way as her twin sister, Holbrook was well into adulthood when the symptoms began. "I started having mobility issues around the age of 25 after my son, Chandler, was born," says Holbrook, who, as it happens, also has a twin without the condition. "I thought it was an old sports injury."

That's the thing about NF. It doesn't discriminate. And as we discover with Ehrhart and Holbrook, every experience is as individual as the person going through it. The former, for starters, suffers from NF Type 1, which causes tumors to grow along her nerves, while the latter has Schwannomatosis, the rarest form, which affects the nerve sheaths. But the two—as well as all those afflicted with NF—share this in common: They don't let the disease define them.

Here, we get to know these inspiring women.

Q&A

Marathon moments: Holbrook, left with friends, and Ehrhart running for the cause

Tell us about your NF journey...


MH: Five years after noticing the mobility issues, I made an appointment to see a doctor and went in for an MRI. They discovered a tumor on my L4 and L5 vertebrae and immediately scheduled me for surgery. Then, during a routine pre-surgery X-ray, another tumor was found, this time around my lung. Since my diagnosis at age 30, I have had 36 radiation treatments, 12 surgeries and 15 tumors removed. Due to the size and severity of the one by my lung, I had two ribs removed as well.

AE: I was two years old when my parents noticed I wasn't growing the same way as my twin sister. My pediatrician ordered an MRI and they discovered an optic glioma on my brain. The NF diagnosis followed shortly thereafter. I've had multiple surgeries throughout my childhood to remove my tumors, including two major back surgeries to remove a benign tumor in the thoracic area of my spine. That tumor also affected my heart.

What has been the most challenging part?


MH: That others think, because you look normal on the outside, you do not have any health issues. When flying, I usually pre-board so I can request the bulkhead seat, which allows me to stretch my legs and helps with the pain from all the tumors on my spine. I have had customer-service agents and flight attendants yell at me, refuse to allow me to pre-board or hold a seat for me. I have also had other passengers get angry, thinking I was faking something.

AE: Coming to terms with this disease. I was just a child when I was diagnosed and, at that age, you don’t think about being sick and the implications of an illness. You just think about coloring, playing soccer, dancing, singing, reading books, all the things that kids do. It was not easy to comprehend that I had a brain tumor, an enlarged aorta or a tumor in my spine. As I got older and began to understand more about NF, I began to worry about something going wrong or where my next tumor would grow.

"I meet a lot of NF fighters by wearing my NF shirt. It gives me the opportunity to let them know we are a community and walk together." — Michele Holbrook

And how did you overcome it?


MH: By having conversations about NF and giving the needed information to make more people aware. I am proud to wear my NF shirt and have conversations when needed or asked.

AE: Through the unwavering support from my gifted medical team and my family. When I look back at this time, I don’t remember the difficulties or the pain I endured; instead, I remember the care I received. I remember the staff who visited and the different therapeutic activities they did with me, always taking the extra step to make me smile. I remember Dr. Green, wearing a funny tie and telling me jokes. After each visit, at the Hospital for Special Surgery (HSS) in New York, I always did something fun in the city with my family—going out to eat, a New York Rangers game, or just something spontaneous. That's what I remember rather than the scary times.

How are you spreading awareness?


MH: In July, I will be rowing from South Florida to North Florida to raise awareness. And as a runner, anytime there is a race, I wear my NF endurance shirt and raise donations for the cause. I also speak to different organizations about NF and try to educate the general public about the effects NF has on the younger generation.

AE: I will be running the NYC Marathon and raising money for the Penny Doerge Adaptive Academy at HSS, which organizes local and regional adaptive programs for patients facing a range of disabilities. (Learn more here.) This marathon is more than just crossing the finish line—it’s about giving back to the hospital that made it possible to live my life to the fullest.

"The necklace I wear has the word 'Unbreakable' engraved on it. I have not let this disease break me or my spirit."
— Alexandra Ehrhart

What's a positive takeaway from this not-so-positive experience?


MH: There are many, but the one that stands out is being selected as the 2023 National Ambassador for the Children's Tumor Foundation. It allowed me the opportunity to spread my passion about finding a cure, and meet some amazing NF fighters and their families. Our children need a cure and I hope that, through my work as the ambassador, I made a positive difference.

AE: It has made me who I am today. I was a three-sport athlete in high school and did lacrosse and cross-country in college. When I was younger and recovering in the hospital, I was told another patient—who was also recovering from surgery—was scared to get out of bed. I had been scared and skeptical when I had to learn how to walk again, too. I got myself out of bed and walked down to her room to show her that it was okay and that she could do it just like I could. This experience taught me to never take anything for granted, live to the fullest and, most importantly, to always have hope and be a light in the tough times of life.

One last thing...


MH: As hard as NF is, I feel I am blessed and lucky because of the opportunities God has given me. I lost my only child four years ago to an accidental drug overdose and we have started a small nonprofit, Chandler's Hope, to help those in need with clothing and other essentials throughout Northeast Florida.

AE: I received my masters in social work from St. Joseph’s University this past May. Everything I went through with NF inspired me to pursue my degree, so I can help patients and their families and give them the hope they need to keep pushing forward, just as the Penny Doerge Adaptive Academy does. (And to support my NYC marathon run to raise funds for the program, click here!)

Recent grad Ehrhart, left, and Holbrook with Team Ohana ocean rowers and supporters

From now to the end of June, we will donate a portion of proceeds from every single veronicabeard.com/en-cr order to Penny's Flight Foundation, a nonprofit dedicated to funding research of neurofibromatosis (NF) and celebrating the life of Penny Doerge. Learn more here.