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September 23: Walk to End NF at the Kansas City NF Walk

September 23: Walk to End NF at the Kansas City NF Walk

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Written by: Hannah Duby

Hi, my name is Hannah and this is my first year as Director of the Kansas City NF Walk taking place September 23rd (next Saturday!) at Penguin Park. I landed this role after my nine year old son Eli was diagnosed with Neurofibromatosis, or NF for short. Prior to his diagnosis we had never even heard of NF. Basically, it's a genetic disorder that causes tumors to grow on nerves throughout the body and there is no cure, even though NF is one of the most common genetic disorders, affecting one in every 3,000 people. In fact, it is more common than Cystic Fibrosis, Duchenne Muscular Dystrophy and Huntington's disease combined. Half of cases are inherited, but in the other half, like in our case, it can happen spontaneously to anyone in any pregnancy. It's a condition that can arise in any family, regardless of race or gender and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities and excruciating pain.  

That is why we're walking -- to raise money for critical research for advancements in better treatments and ultimately a cure. Proceeds from our walk benefit the Children's Tumor Foundation, a leader in the fight against NF. 

The KC NF Walk is a family and community event. It's a fundraising initiative to support research, raise awareness and provide support to those touched by NF in our community with a day of fun. 

Although many people don't even realize our outgoing nine year old has NF, Eli was actually dealt the more rare form, NF type 2, which can also affect hearing loss. However, despite being blind in his left eye, numerous tumors on his spine and auditory nerves (which can result in so many complications later on) he is currently unstoppable, refusing to let anything slow him down! He is a black belt in Taekwondo, loves basketball, soccer, rollerblading... he is fast, fearless and all boy! We have watched our son undergo numerous eye surgeries, and every six months we travel to St. Louis Children's Hospital to have his tumors monitored. However, our family has traveled as far as Johns Hopkins in Baltimore to establish the best specialists in his care. We do what we need to do to ensure he has the best future possible. He's a fighter and inspires us to fight as well! 

Since accepting the position of NF Walk Director this year, I have really had to step out of my comfort zone, but in doing so I have been able to obtain proclamations declaring May 17th World NF Awareness Day from the cities of Shawnee, KS and Kansas City, MO, and the State of Kansas. I have also been hosting several fun and successful fundraising events for our walk, from Hamburger Mary's Bingo, to Freezing Moo, Panera, Chipotle and my son's favorite -- an Ultimate Water Gun Fight! It is crucial for us to have the support and involvement from our community to be able to be successful and make a difference. Eli and I welcome you all to come join us at our walk! You may register for free or make a donation to our walk at If you're interested in learning more about the Children's Tumor Foundation, visit

WHAT: The 3rd Annual Kansas City NF Walk

WHO: Open to the public - everyone is welcome (registration is free) -- individuals, friends, families, teams, corporate groups.  

WHERE: Penguin Park, 4124 NE Vivion Rd., Kansas City, MO 64119

WHEN: Saturday, September 23, 2017. Check-In begins at 9:00 am. Walk begins at 10:00 am.

Here are some highlights you can expect for the day:

-Costumed Superheroes!

-Raffle with amazing prizes!

-Hero Dash!


-Face painting!

-Food and Beverages!

-And so much more!

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