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Volunteers Make NF Visible All Year Round

By May 23, 2022December 4th, 2023Awareness, Ways to Give

The Children's Tumor Foundation’s volunteers are our boots on the ground and are essential to finding a cure for neurofibromatosis. We have volunteers at every level of the organization working on strategy, aiding the research process, raising awareness and funds, advocating for and educating others. We would not be able to do what we do without this crucial group of selfless people who drive our mission and vision to End NF. Join us during NF Awareness Month in May as we celebrate CTF Volunteers who make NF visible all year long!

Allow us to introduce a few examples of what volunteers are doing at CTF to make a difference for all people living with NF.

Meet Leyla Ghassemi, the Shine a Light Walk Organizer in Seattle, WA. Leyla became the organizer for the Seattle Shine a Light NF Walk in 2020, a difficult year to start leading the walk. Yet Leyla rose above all of the challenges the pandemic threw her way and created an outstanding virtual celebration. Fast forward to 2022, Leyla has continued to grow this event by establishing strong partnerships with local businesses who supported the event in 2021 and are returning in 2022 at an even higher level. We are particularly grateful for her leadership and for securing our first Walk Presenting Sponsor. As a person living with NF, Leyla did all of this despite some personal health challenges. In the last year, Leyla had surgery of an atypical neurofibroma in her upper arm which came with some complications. Additionally, since taking on the role of organizer, Leyla has been a part of a clinical research trial at the NIH for selumetinib and has experienced multiple side effects, but she has also seen her tumors shrink! When asked why she’s so passionate about her volunteer engagement Leyla said: “I have always believed that I have NF, NF is a part of my life, but NF does not define me.”

We are also excited to highlight the incredible contributions of Christine Gallager, Event Director for the Denver Cupid's Undie Run. Although Christine does not have a direct connection to NF, 2023 will be her 4th year leading this event. She is also the mentorship chair of Cupid’s Event Director Advisory Council (CEDAC).  When not working on all things Cupid’s, or her real job, or exercising, or completing another house project, or being a mom, she volunteers with a local outdoor stewardship agency, leading crews in trail construction and renovation. Christine was recruited for Cupid’s Undie Run, through the November Project, back in 2014. She had so much fun and came back year after year and eventually became the Event Director! Those who know her well, know it’s just like her to find herself in charge of something she loves, and that’s how she got here. When asked why she loves her volunteer role so much, she says, “It’s because we build a community and make a difference.” She also says, “It’s rare to find a group so passionate about something that (for many of us) doesn’t directly impact them.” When she started with Cupid’s, we talked a lot about “affecting the unaffected” and she feels so strongly about that. She also loves the community Cupid’s builds locally; the families she has met, and the connections and friendships that have been built among the NF families is inspiring to her. 

Our next spotlight goes to Andrew “@hopfanatik” Steele, from Seattle WA  – Connect2Fight Advisory Council Chair. Andrew goes above and beyond to Make NF Visible, not only in his own community, but across the globe. As chair of this important strategic council, Andrew (aka Hop) shares honest and proactive feedback and solutions for the Connect2Fight program. He has hosted his own charity stream for C2F, hosted Among Us during Rare Disease Month, and was a Judge during a Minecraft Anti Bullying event last October, which meant that he observed and judged for over 9 hours of online competition! Hop also stopped by the Seattle Cupid's Undie Run this year! He really has jumped into his volunteer role with both feet! Like many of the CTF volunteers, Hop balances his engagement with being an awesome dad of 3, including Nolan, age 7 who lives with NF1, and having a full-time career. Andrews insights, leadership and knowledge are so very valued on the C2F team. 

Next, we would like to share an extraordinary volunteer who is an NF Endurance (NFE) Athlete, NFE Task Force member, Shine A Light Walk participant, and a member of the Volunteer Leadership Council (VLC), Christy Mohr from Little Elm, Texas. Nearly 3 years ago, Christy began a personal fitness journey to live a healthier lifestyle through diet and exercise. Slowly and steadily, she lost weight and built up the strength and conditioning to walk 1 mile, then 2; then she set her sights on the 5K distance. In 2020, she joined NF Endurance to make her miles more meaningful, and began signing up for 5K & 10K races and other fitness challenges. Now, her motivation is to raise funds and awareness in honor of her husband, Hank, who lives with NF1, as she continues on her incredible fitness journey. Christy shared what motivates her to volunteer for CTF: “I’m so proud to be part of a great group of people that are racing like I am to raise money for a cure but also to raise awareness about NF.” Christy uses her social media to share her achievements and milestones, including every race she completes; to connect with others in the NF Community; and to fundraise for CTF and tell the world about NF: “I do these races for this man, my husband, my hero who has NF, to raise money for research and to help find a cure, not just for him but others who have NF.”  One day, Christy would love to run the marathon in honor of Hank; for now, her goal in 2022 is to build up from a walk to a run-walk for her 5K and 10K races, and to be prepared for a half-marathon in 2023. She is firmly committed to both her fitness journey and to using it as a way to Make NF Visible.  

In addition to those mentioned above, CTF has volunteers working on teams to help inform the research process, to review grant applications, and to collaborate with pharma. We have committees which include volunteers who are helping to plan the NF SUMMIT, strategize about Volunteer Engagement, participate in the HACK for Rare events, as well as a volunteer Board of Directors and Junior Board, just to name a few. It’s pretty obvious that volunteers are at the center of everything we do and we are so grateful to have such an exceptionally passionate, continuously dedicated, and ferociously eager group who are working tirelessly alongside staff to End NF! 

If you would like to become a CTF volunteer or learn more about our opportunities for volunteers, please email