The Children’s Tumor Foundation (CTF) is excited to announce the second annual Make NF Visible Community Recognition Awards, which recognizes individuals or groups, at every level of involvement, who Make NF Visible either in the local community, nationally, or globally.
CTF hosts a ceremony during the NF Summit each year to recognize all the ways that volunteers, clinicians, researchers, community partners, and patient advocates around the world are making NF visible. This year’s Make NF Visible Awards were presented and nominees were highlighted at a special luncheon on June 22, 2023, at the NF Summit in Scottsdale, Ariz.
Award categories were specifically created to recognize the contributions, talents, and accomplishments of a diverse group of committed people who work tirelessly throughout the year to help CTF fulfill its mission.
2023 Volunteer of the Year: Peter Lindeback, CTF Volunteer Leadership Council Member and Arizona Shine a Light Walk Chair, NF2 Accelerator
These volunteers have inspired others through actions, words, setting an example, embracing innovation, and being a team player. They have built a community and made valuable connections which help to support others along their journeys. Change has not been an obstacle, in fact, they have embraced it with positivity, flexibility, and creativity and has encouraged others to do the same. They are a true champion of the Foundation and the NF cause as well as an advocate for the greater community. These outstanding volunteers is someone who enthusiastically raises NF awareness and educates the unaffected in ways that bring new supporters into the fold. Passion, drive, commitment, enthusiasm, and relentless focus on the CTF mission are in no short supply for the Children’s Tumor Foundation Volunteer of the Year.
Make NF Visible Community Advocate Award: Jessica Jemente, CTF Volunteer Leadership Council Member and Southern California Shine a Light Walk Organizer
This award goes to a volunteer who is focused on promoting the cause at every opportunity. They find ways to raise awareness, advocate and fundraise by partnering with NF patients, families, clinicians, legislators and all those in our NF eco-system. They surpass expectations and amaze at every interaction. They respect, care about, and speak up for our constituents while seeking and listening to the NF community recognizing that their perception is our reality. They rarely miss an opportunity to advance CTF’s mission.
Make NF Visible Clinician Award: Verena Staedtke, MD, PhD, Director of Pediatric Neurofibromatosis, Johns Hopkins Comprehensive Neurofibromatosis Center
This award goes to a clinician who goes above and beyond as an advocate for the NF community. They embody CTF’s mission to “Drive Research, Expand Knowledge, and Advance Care for the NF Community” through their professional and volunteer commitments. This clinician actively seeks out opportunities to engage with the NF community in meaningful ways, and is always expanding their own knowledge in clinical practice. This is a clinician who inspires younger generations of clinicians and researchers to join in our fight to End NF.
Make NF Visible Young Leader Award: Corey Altman, CTF Junior Board Co-Chair
This award goes to a young adult who passionately volunteers and embodies our mission to “Drive Research, Expand Knowledge, and Advance Care for the NF Community”. Their passion, their pride, and their ability to put the mission of CTF first and foremost are his/her strengths. This volunteer is an inspiration and serves as a guiding star to others. He/she remembers and is empathetic to the needs and challenges of the NF patient, family and community and does his/her work with them in mind.
Make NF Visible Patient Advocate Award: Danielle Bonadies, CoFounder and Director of Genetics at My Gene Counsel, LLC, CTF Patient Representative
This award goes to an individual who understands the importance of a united and collaborative team approach. He/she works with stakeholders such as researchers, research institutions, the pharmaceutical industry, the Food and Drug Administration, and patient advocacy organizations to accelerate the development of new treatments by focusing researchers on real-life issues that they may not have otherwise considered. He/she views these partners, along with staff, and especially our patients and their families as important team members. He/she is a shining example of CTF’s view that people with NF are not just subjects, but are health care consumers who have a role in managing their care, directing their health outcomes, and accelerating therapies for the entire NF community.
Make NF Visible Researcher Award: Angela Hirbe MD, PhD, Assistant Professor Department of Medicine Oncology Washington University School of Medicine in St. Louis, CTF Funded Researcher
This award is given to an individual who engages in meaningful NF research and is willing and able to communicate their work to the NF community. This award celebrates any type of scientific contribution, from basic science to chemistry, genetics, drug testing and even data scientists. The recipient seeks wide-ranging opportunities to talk about NF and the impact of CTF funding. This person is a young investigator and passionate about pursuing research that will impact future understanding of NF leading to more treatments, and one day, to a cure.
Make NF Visible Corporate Champion Award(s): American Airlines and Love, Tito’s
This award is given to a corporate partner who demonstrates a long-term commitment to the mission and vision of the Children’s Tumor Foundation and
supports the NF Community through its philanthropy and community engagement.
The top picture to the right features Patti Ptasznik, Sr. Manager Data Engineering & Analytics at American Airlines, accepting the MNFV Corporate Champion Award. The IT and business teams at American Airlines have been working with CTF to help it achieve data excellence, in support of its mission to advance treatments for NF
The bottom picture to the right highlights Love, Tito’s. The philanthropic heart of Tito’s Handmade Vodka supported Cupid’s Undie Runs nationally in 2022 by matching donations up to $50,000 and providing in kind donations.
Make NF Visible Global Reach Award: Samia Arslane, Editor in Chief GENLUX Magazine, CTF Europe Board Member
This award is given to an individual who has extended their outreach beyond the borders of one country and Makes NF Visible around the globe. They are actively engaged in a way that drives the mission and vision of the Foundation both in their own backyard and across borders by spreading awareness, raising funds for research, or advancing care for people living with NF.
Make NF Visible Fight NF Your Way Award: Emily Tseffos, CTF Volunteer Leadership Council Member, Fight NF Your Way Event Organizer
This award is given to an individual or group of individuals who are focused on bringing awareness of CTF and NF to their community in a way that works for and speaks to their community. Whether a fundraising event, a grassroots awareness campaign, a research opportunity, being a staunch advocate, or undertaking a personal challenge that brings light to their NF journey, they are truly committed to Making NF Visible and Fighting NF their way. They have not only moved their own community, but they have also moved the NF Community.
2022 Top Fundraisers:
Shine a Light NF Walk Top Fundraising Team: Team Sam (Nancy Colaw), Denver Shine a Light Walk
Shine a Light NF Walk Top Fundraising Individual: Alexander Shaw, Carolina’s Shine a Light Walk
NF Endurance Top Fundraising Team: Run4Robert (Carolanne Owenby)
NF Endurance Top Fundraising Individual: Carolanne Owenby, NYC Marathon
Cupid’s Undie Run Top Fundraising Team: Cure NF with Jack Boston (Jake Burke)
Cupid’s Undie Run Top Fundraising Individual: Kevin McMeen, Cupid’s Undie Run Chicago
