18 | JULY 20 • 2023 

OUR COMMUNITY
ON THE COVER

Nick remained in the hospital for 
more than two months, fighting for 
his life. Miraculously, Nick was able 
to come home in October, but sadly, 
with less vision and his hearing 
beginning to fade. By February, Nick 
could no longer see or hear and was 
on a feeding tube. The decision was 
made to once again give radiation a 
shot in hope of Nick regaining some 
hearing. It was unsuccessful. There 
was simply nothing else to be done. 
When Nick came home from the 
hospital one final time, the doctors 
told the family not to expect him 
to make it more than a few minutes 
after they pulled his breathing tube 
out. Nick made it over 24 hours. 
“Even in the very end, he was as 
tough as they come, fighting for 
more life,” Dan said. 
After a lifelong, courageous battle 
with NF1, Nick died peacefully at 
home surrounded by family on May 
6. He was 26 years old. 
Earlier this year, when it 
was getting more difficult to 
communicate with Nick because 
he could no longer hear or see, 
everyone was feeling a little helpless 
and desperate. In this moment, Nick 
could sense that Jennifer and Dan 
were upset and dictated the most 
beautiful message to his caregiver 
who then texted it to them: “I love 
you guys. You’ve given me literally 
everything. I don’t want you to think 
that this is any of your faults. Love, 
Nicolas.”
“So, in the middle of his suffering, 
his empathy and caring for other 
people showed as he was more 
concerned with relieving any bad 
emotions his mother and I may have 
over the situation,” Dan recalled.

FIGHTING TO END NF
Jennifer and Dan Gilbert have 
been passionate advocates in the 

fight to end NF since Nick was first 
diagnosed. They have been longtime 
supporters of NF research initiatives 
and established the Gilbert Family 
Foundation in 2015 to further 
advance NF research efforts.
In 2017, the Gilberts established 
NF Forward, a nonprofit 
organization sharing a vision with 
the Gilbert Family Foundation 
to eradicate NF by funding 
groundbreaking, cutting-edge NF 
research.
NF Forward’s signature event is 
the beNeFit, a major gala held in 
Downtown Detroit every November. 
Since 2013, the event has raised over 
$55 million for NF research and 
attracted more than 1,700 supporters 
annually to join the fight to end NF. 
As a member of the Children’s 
Tumor Foundation Junior Board, 
Nick himself was the biggest 
advocate in the fight to end NF. NF 
Forward’s gala was Nick’s favorite 
night of the year. 
“It was a night he could count on 
everybody to be around and support 
something obviously so important 
to him,” Jennifer said. “I think that 
made him not just feel special, but 
kind of seen.” 
Nick loved his space in the NF 
community and took great pride 
in being an ambassador, even 
developing relationships with many 
other individuals who had the 
disorder. 
Once Nick got involved, he wasn’t 
just showing up for meetings — he 
was busy planning, reaching out to 
his network and coming up with 
great ideas for the cause.
The Gilbert family and its 
foundation are committed to the 
cause of wiping NF off the planet, 
hopefully in the near future. 
“
And we will do it in Nick’s name,” 
Dan said. 

continued from page 16

LEFT, TOP TO BOTTOM: A young Nick plays basketball while at Camp Tanuga 
in Kalkaska, Michigan. Nick playing flag football in 2004.