Make NF Visible Recognition Awards 2024

The Children's Tumor Foundation (CTF) is thrilled to announce the 3rd annual Make NF Visible Community Recognition Awards! These awards celebrate individuals or groups who have made a significant impact by raising awareness for NF in their local community, nationally, or globally

During the NF Summit each year, CTF hosts a special ceremony to honor volunteers, clinicians, researchers, community partners, and patient advocates worldwide who are dedicated to making NF visible.

This year, the Make NF Visible Awards were presented, and nominees were celebrated at an inspiring luncheon on April 13, 2024, during the NF Summit in San Antonio, TX.

The award categories were carefully crafted to recognize the contributions, talents, and achievements of a diverse group of passionate individuals who work tirelessly throughout the year to help CTF fulfill its mission.

2024 Volunteer of the Year:
Gwen Coverdale, CTF Volunteer Leadership Council (VLC) Vice Co-Chair
Gwen's steadfast commitment and exceptional leadership at the Volunteer Leadership Council (VLC) over the past 7 years have been truly remarkable. She embodies every aspect of this prestigious recognition with unparalleled grace.

Driven by our mission, Gwen not only comprehends the significance of our organization's work but also effectively conveys its importance to others. She exemplifies the qualities of a Go-Getter, consistently raising awareness and support for NF through her fundraising initiatives and participation in local and national events.

As a leader, Gwen's impact extends beyond the VLC, resonating throughout the entire NF community. Her remarkable contributions to CTF's Volunteer Engagement efforts showcase her innovative spirit, collaborative nature, and outstanding dedication.

Despite her profound influence, Gwen remains humble and understated in her approach, quietly making a monumental difference. She truly deserves this honor, embodying the essence of an unsung hero whose light shines brightly within our organization.

Make NF Visible Researcher Awards:
R. Taylor Sundby, MD, Pediatric Hematologist-Oncologist at the National Cancer Institute
Nancy Ratner, PhD, Professor at Cincinnati Children's Hospital Medical Center
We were delighted to recognize two spectacular individuals who tied for this year's honor. First, Dr. Sundby, a distinguished physician and researcher at the NIH, captivated audiences with his recent presentation unveiling thrilling findings on identifying the risk of malignant transformation in individuals with NF1-PN. Beyond his exceptional scientific prowess, Dr. Sundby stands out for his quick and enthusiastic response to inquiries from patients and their families. His remarkable talent lies in his ability to convey highly intricate scientific concepts in a manner that is both accessible and impactful for the community, making him truly remarkable. Read more about Dr. Sundby's research here.

Next, meet Dr. Ratner, the visionary researcher who unveiled the groundbreaking discovery that inhibition of Mek induces plexiform tumor shrinkage. Not only is she a trailblazer in her field, but Nancy is also renowned for her forward-thinking approach, constantly exploring mechanisms that have yet to be explored by others. With her boundless creativity and innovative spirit, she's the driving force behind pioneering new pathways to ultimately conquer NF.

Make NF Visible Global Reach Award:
Jaishri Blakeley, MD, Professor of Neurofibromatosis in Neurology, Oncology, and Neurosurgery at Johns Hopkins School of Medicine, director of the Johns Hopkins Comprehensive Neurofibromatosis Center and director of the Neurofibromatosis Therapeutic Acceleration Program (NTAP)
A unicorn healer with a compassionate soul, Jaishri Blakely is genuinely concerned about patients not merely as participants in clinical trials, but as individuals. Furthermore, Dr. Blakeley has significantly contributed to the globalization of NF through the Francis Collins Scholarships, dedicated to nurturing the next generation of clinical professionals. Additionally, she has been a pivotal force in the establishment of global platform trials, notably contributing to the development of the NF platform trial and currently spearheading the global NF platform basket trial in Europe. Her life is intertwined with and dedicated to serving those affected by NF, making her an exemplary leader in the field.​

Make NF Visible Clinician Award:
Miriam Bornhorst, MD, Pediatric Neuro-oncology, Lurie Children's Hospital, Chicago, IL
Dr. Bornhorst has been a dedicated clinician, researcher, and supporter of the NF community for the last several years. Her commitment is evident beyond the exam room through her active involvement in organizing NF Family Day at Children's National in DC and her participation in the Shine A Light NF Walks in DC and Virginia. Known for her thoughtfulness, compassion, and approachability, she consistently goes the extra mile to support individuals within the community. Dr. Bornhorst recently relocated from DC to Lurie Children's in Chicago. Reflecting on her move before departing her position in DC, she expressed her heartfelt connection to her patients and their families, emphasizing that the transition would enable her to make an even greater impact, a priority she holds dear.​

Make NF Visible Young Leader Award:
Brianna Worden, CTF Junior Board Co-Chair and Volunteer Leadership Council member
Brianna Worden is an incredible advocate and leader, who currently serves as the Co-Chair of the CTF Junior Board. She was also a former National NF Ambassador and works as a certified school counselor. A three-time cancer survivor from a small town of only 400, Brianna reaches the masses with her platform as Miss Empire State International to shine a light on invisible illness.

To learn more about Brianna, follow her on social media!

Make NF Visible Community Advocate Award:
Leanna Scaglione, CTF Volunteer Leadership Council Member and NF Endurance Athlete
As a young adult living with NF2-SWN, Leanna has made it her mission to raise funds through our NF Endurance program and use her NF journey as a platform on social media to raise awareness. ​

Leanna went through several debilitating surgeries this past year and never skipped a beat in sharing her story throughout. She takes her camera with her on runs, speaks candidly about her life, and always presents herself as an educator, never a victim. ​

She inspires everyone and is always ready to make NF Visible through the good, the bad, and the not-so-glamorous moments. ​

In January, she had brain surgery (to remove an acoustic neuroma) that resulted in her losing hearing in her right ear and was quickly back to training for the NYC Half Marathon, which she ran in March as a member of the NF Endurance team. ​

Check out her TikTok or Instagram channels! ​

Make NF Visible Patient Advocate Award:
Michael Peper, CTF Engage, Patient Representative
Michael is Dad to NF Hero, Leo, and a library sciences researcher in Kansas, MO. While his wife Tandy Wolters, has been involved with CTF for several years, Michael decided to get involved this year in his own way. He voluntarily sought out an NF researcher and offered to provide his professional research skills during her study. They have formed a wonderful partnership and are working together on a study this year. He also became involved with CTF Engage, CTF's newly revamped Patient Engagement program.​ Hear more about CTF Engage and Michael's project in this session of the NF Summit 2024: NF Summit 2024: Patient Engagement in NF Research.

Make NF Visible Corporate Champion Award:
EOG Resources, Inc. (Engaged by Cristin Rhinehart, Volunteer Leadership Council member)
EOG Resources is a national company based in Denver, Colorado and CTF's first corporate team raising funds at the $25K+ level. ​In fact, to be specific, they have generated over $55,000 for CTF in the past three years. ​

Cristin Rhinehart, mom to 6-year-old NF Hero, Carter and living in the Denver, CO area, first engaged EOG with CTF through her Shine a Light Denver Walk and Cupid's Undie Run teams. In 2023, Cristin formed a corporate team for EOG Resources for the Colfax Marathon that raised $42,000 for NF Endurance, and they have already formed a team for the 2024 Colfax Marathon. ​Together, Cristin and EOG have established the ideal model for CTF corporate teams.​ Cristin shared about her engagement with EOG during the NF Summit 2024 during a session about this topic: NF Summit 2024: Thinking Big, Partnering for Success.

Make NF Visible Fight NF Your Way Award: Christine Gallager, CTF Volunteer Leadership Council Member, Denver Cupid's Undie Run Event Director
Christine's event, Denver's HoLITdays, celebrated its fourth year in 2024, having evolved from a fundraising pivot in 2020 into a cherished community event. Christine's innovative approach to "Making NF Visible" ensures safe community engagement, with donations for treats like hot chocolate and cookies contributing to raising awareness about NF. Beyond the lights, the event fosters community connections and educates attendees about the cause, bringing joy to many in a simple yet impactful way.

Make NF Visible Community Write-In Category Awards

Community Connector:
Sheila Drevyanko, Volunteer Leadership Council Member
Sheila's journey as an adult living with NF has transformed into an extraordinary mission of compassion and support for others facing similar challenges. Her unwavering dedication to creating connections among adults living with NF and alleviating their sense of isolation is genuinely inspiring.​ She devotes herself wholeheartedly to championing this segment of the community, diligently educating them about the invaluable resources offered by CTF. She single-handedly administers and moderates a vibrant Facebook group for Adults Living With NF (AWNs).​ Her commitment extends far beyond the digital realm, as she spends countless hours providing guidance and support over the phone, warmly welcoming AWN attendees at CTF events, and actively participating in local symposia and Walk events.​​ Her selfless contributions and tireless advocacy exemplify the profound impact one individual can have in fostering hope, connection, and empowerment within the NF community.​

Share the Love Award:
Stoney Jesseph, Stoney's Bar and Grill, Denver, CO
Stoney and his team have steadfastly supported Cupid's Undie Run and the Children's Tumor Foundation, serving as Denver's event venue and after-party destination. Over the past 10 out of 13 years, Stoney's has hosted the run, helping to raise over $1.4 million for CTF's mission. Stoney's commitment goes beyond financial support; he treats Cupid's Undie Run as his event, providing extensive assistance amounting to over $80,000 in donated support. His decade-long partnership has not only generated substantial funds but has amplified awareness of CTF and the event, making Stoney a true local partner and an invaluable asset to CTF's mission.​

Community Champion Award:
George Thuronyi, CTF Board of Directors, Cupid's Undie Run Team Captain
George is a shining star in our NF community. In addition to serving on CTF's Board of Directors, George volunteers at four events each year during the Cupid Undie Run season, graciously helping with anything we need - from packet pickups to media interviews to day-of-event set-up and operations. He also works hard to fundraise for each CUR event he attends - reaching the VIP level and going above and beyond. ​His team raised $60,000 alone in D.C. this year and remains one of the top teams across the entire CUR campaign. ​George always steps up for the NF community as a leader, a go-getter, and a shining star in our community, even though he did not begin his involvement with a personal connection to the NF cause.

2023 Top Fundraisers

• Shine a Light NF Walk Top Fundraising Team: Miles for Mags (Maureen Hussey), Carolinas Shine a Light Walk
• Shine a Light NF Walk Top Fundraising Individual: Maggie Hussey, Carolina's Shine a Light Walk
• NF Endurance Top Fundraising Team: Eddie's Squad (Eddie Purtell)
• NF Endurance Top Fundraising Individual: Eddie Purtell, BMW Berlin-Marathon
• Cupid's Undie Run Top Fundraising Team: CureNFwithJack Boston (Jake Burke)
• Cupid's Undie Run Top Fundraising Individual: Kevin McMeen, Cupid's Undie Run Chicago

Eddie Purtell