Children's Tumor Foundation

Children's Tumor Foundation and Global Coalition for Adaptive Research Announce Strategic Alliance to Implement NF Platform Clinical Trial

Retrieved on: 
Thursday, October 5, 2023

NEW YORK, Oct. 5, 2023 /PRNewswire/ -- The Children's Tumor Foundation (NEW YORK, NY and BRUSSELS, BELGIUM) and the Global Coalition for Adaptive Research (LARKSPUR, CA) – The Children's Tumor Foundation (CTF) and Global Coalition for Adaptive Research (GCAR), today announced their alliance to accelerate the development of treatments for patients with NF (neurofibromatosis or schwannomatosis) – a group of rare and often debilitating diseases with high unmet medical need. CTF and GCAR are partnering to operationalize a first-of-its-kind clinical trial for patients with NF that was initially designed through the EU-PEARL initiative.

Key Points: 
  • CTF and GCAR are partnering to operationalize a first-of-its-kind clinical trial for patients with NF that was initially designed through the EU-PEARL initiative.
  • The establishment of the NF platform trials will expedite the development of effective treatments for patients," said Dr. Annette Bakker, President of the Children's Tumor Foundation.
  • Our alliance with CTF exemplifies a collaboration that places patients and the community at the forefront of clinical research."
  • Additionally, the Foundation's NF Patient Registry provides dependable access to NF patients available to participate in NF clinical trials and research studies.

Gilbert Family Foundation Contributes Nearly $375 Million in Partnership with Henry Ford Health to Bring Shirley Ryan AbilityLab to Detroit and Create the Nick Gilbert Neurofibromatosis Research Institute

Retrieved on: 
Wednesday, September 6, 2023

The Gilbert Family Foundation also announced the creation of the Nick Gilbert Neurofibromatosis Research Institute, bringing a revolutionary neurofibromatosis research institute to Detroit in partnership with Henry Ford Health + Michigan State University Health Sciences .

Key Points: 
  • The Gilbert Family Foundation also announced the creation of the Nick Gilbert Neurofibromatosis Research Institute, bringing a revolutionary neurofibromatosis research institute to Detroit in partnership with Henry Ford Health + Michigan State University Health Sciences .
  • To bring the projects to life, the Gilbert Family Foundation will contribute nearly $375 million in grant funding.
  • "Jennifer and I are extremely proud to work alongside Henry Ford Health and Michigan State University to play a part in bringing both the Shirley Ryan AbilityLab and Nick Gilbert Neurofibromatosis Research Institute to Detroit.
  • The overall construction for the space will cost $179 million, with $119 million coming from the Gilbert Family Foundation and $60 million being financed by Henry Ford Health.

NF Researchers, Clinicians and Patients Gather for Annual Conference in Scottsdale

Retrieved on: 
Thursday, June 22, 2023

NEW YORK, June 22, 2023 /PRNewswire/ -- From June 21 through June 27, the largest gathering of NF researchers, clinicians, and patients in the world will take place at the Fairmont Scottsdale Princess in Scottsdale, Arizona. NF is a group of genetic disorders that causes tumors to grow on nerves throughout the body, and affects 1 in 2,000 births of all populations equally. As such, NF affects millions worldwide, but is underrecognized. While there is one approved treatment for a small subgroup of NF patients with plexiform neurofibromas, there is no cure yet, and the vast majority of NF patients face serious health issues because of  the condition. This gathering in Arizona, comprising two meetings, offers novel insights into NF research, generates enthusiasm that effective therapeutics are on the horizon, and fosters a deeper sense of community.

Key Points: 
  • Hosted by the Children's Tumor Foundation, NF Summit and NF Conference are the largest gathering of the NF community in the world
    NEW YORK, June 22, 2023 /PRNewswire/ -- From June 21 through June 27, the largest gathering of NF researchers, clinicians, and patients in the world will take place at the Fairmont Scottsdale Princess in Scottsdale, Arizona.
  • While there is one approved treatment for a small subgroup of NF patients with plexiform neurofibromas, there is no cure yet, and the vast majority of NF patients face serious health issues because of  the condition.
  • - NF Conference : this four-day global meeting (June 24-27) attracts leading specialists from across a wide range of scientific disciplines and research and clinical backgrounds, all focused on improving outcomes for NF patients.
  • This annual event is the most important date on the NF research calendar, and is critical to consensus building and advancing basic, translational, and clinical research in NF and related fields.

Children's Tumor Foundation Announces Nearly 500 Architectural Icons Around the World to Shine a Light on NF on World NF Awareness Day

Retrieved on: 
Wednesday, May 17, 2023

NEW YORK, May 17, 2023 /PRNewswire/ -- The Children's Tumor Foundation announces nearly 500 world-famous buildings, bridges and architectural icons are participating in this year's Shine a Light on NF campaign and will show their support in the global fight against NF by lighting up in blue and green, the official colors of the NF cause. NF is a group of genetic conditions that affects 4 million people around the world and causes tumors to grow on nerves throughout the body. It can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. There is no cure yet, but this campaign raises awareness and communicates the need for scientific research funding into NF.

Key Points: 
  • There is no cure yet, but this campaign raises awareness and communicates the need for scientific research funding into NF.
  • There is no cure, but this campaign raises awareness and communicates the need for scientific research funding into NF.
  • Launched by the Children's Tumor Foundation in 2014 to increase public knowledge of this rare disease, the Shine a Light on NF campaign has grown substantially over the years.
  • The Children's Tumor Foundation partners with NF organizations, medical and research institutions, and corporate and media partners around the world to expand awareness globally.

Children's Tumor Foundation Announces Start of NF Awareness Month with Make NF Visible Campaign

Retrieved on: 
Monday, May 1, 2023

NEW YORK, May 1, 2023 /PRNewswire/ -- May is NF Awareness Month and the Children's Tumor Foundation is excited to release a new class of inspiring patient stories for the Make NF Visible campaign. NF is a group of genetic conditions known as neurofibromatosis or schwannomatosis that cause tumors to grow on nerves throughout the body. NF affects all populations equally, but it manifests differently in each patient; patients with visible signs of NF struggle to be seen as more than just their NF, while patients whose NF is internal, or 'invisible,' struggle to make others understand. NF Awareness Month is an opportunity to amplify the voice of all NF patients through the 'Make NF Visible' initiative.

Key Points: 
  • 31 Days to Make NF Visible, get involved, and drive research for rare genetic condition that affects millions people worldwide and has no cure
    NEW YORK, May 1, 2023 /PRNewswire/ -- May is NF Awareness Month and the Children's Tumor Foundation is excited to release a new class of inspiring patient stories for the Make NF Visible campaign.
  • NF Awareness Month is an opportunity to amplify the voice of all NF patients through the 'Make NF Visible' initiative.
  • World NF Awareness Day, May 17, will culminate with the 4th annual Make NF Visible: A World NF Day Live Event.
  • For more information on the Children's Tumor Foundation, as well as all NF Awareness Month campaign initiatives, please visit makenfvisible.org.

Gabriel Groisman Elected Chairman of the Board of the Children's Tumor Foundation

Retrieved on: 
Monday, December 26, 2022

NEW YORK, Dec. 26, 2022 /PRNewswire-PRWeb/ -- The Board of Directors of the Children's Tumor Foundation (CTF) has unanimously elected Gabriel Groisman of Bal Harbour, Florida, as Chairman of the Board. First elected to the CTF Board in 2016, Mr. Groisman most recently served the Foundation as Vice-Chairman of the Board, and previously as Secretary. He has also served as Chair of the Community Relations and Government Engagement Committee of the Board.

Key Points: 
  • The Board of Directors of the Children's Tumor Foundation (CTF) has unanimously elected Gabriel Groisman of Bal Harbour, Florida, as Chairman of the Board.
  • NEW YORK, Dec. 26, 2022 /PRNewswire-PRWeb/ -- The Board of Directors of the Children's Tumor Foundation (CTF) has unanimously elected Gabriel Groisman of Bal Harbour, Florida, as Chairman of the Board.
  • First elected to the CTF Board in 2016, Mr. Groisman most recently served the Foundation as Vice-Chairman of the Board, and previously as Secretary.
  • "I am deeply grateful and humbled to have the support of the Board of the Children's Tumor Foundation to serve as its Chair," said Gabriel Groisman.

Colbeck Capital Management Sponsors Children's Tumor Foundation's 2022 Gala

Retrieved on: 
Monday, November 14, 2022

NEW YORK, Nov. 14, 2022 /PRNewswire/ --Colbeck Capital Management continues its long-term support of the Children's Tumor Foundation (CTF) by sponsoring the upcoming 2022 National Gala .

Key Points: 
  • NEW YORK, Nov. 14, 2022 /PRNewswire/ --Colbeck Capital Management continues its long-term support of the Children's Tumor Foundation (CTF) by sponsoring the upcoming 2022 National Gala .
  • The gala will be hosted by actor and producer Jonathan Sadowski and television host Raina Seitel.
  • Colbeck Capital Management ( colbeck.com ) is a leading, middle-market private credit manager focused on strategic lending.
  • Colbeck sponsors its portfolio companies through consistent engagement with management teams in areas such as finance, capital markets and growth strategies, distinguishing itself from traditional lenders.

Colbeck Capital Sponsors The Children's Tumor Foundation Online Charity Poker Tournament

Retrieved on: 
Friday, October 7, 2022

NEW YORK, Oct. 7, 2022 /PRNewswire/ -- Colbeck Capital Management and co-founder Jason Colodne are proud to continue to support the Children's Tumor Foundation (CTF) as a sponsor for their upcoming Online Charity Poker Tournament .

Key Points: 
  • NEW YORK, Oct. 7, 2022 /PRNewswire/ -- Colbeck Capital Management and co-founder Jason Colodne are proud to continue to support the Children's Tumor Foundation (CTF) as a sponsor for their upcoming Online Charity Poker Tournament .
  • The poker tournament offers donors the opportunity to participate together in an evening of entertainment and competition while helping to bolster the CTF mission to end neurofibromatosis, or NF.
  • Colbeck Capital Management ( colbeck.com ) is a leading, middle-market private credit manager focused on strategic lending.
  • Colbeck sponsors its portfolio companies through consistent engagement with management teams in areas such as finance, capital markets and growth strategies, distinguishing itself from traditional lenders.

Jason Colodne and Jason Beckman, Co-Founders and Managing Partners of Colbeck Capital Support The Children's Tumor Foundation's Virtual Research Reception

Retrieved on: 
Tuesday, June 14, 2022

NEW YORK, June 14, 2022 /PRNewswire/ --Colbeck Capital Management, a leading middle-market private credit manager focused on strategic lending, along with its co-founders Jason Colodne and Jason Beckman, continue to support the Children's Tumor Foundation and its Virtual Research Reception.

Key Points: 
  • NEW YORK, June 14, 2022 /PRNewswire/ --Colbeck Capital Management, a leading middle-market private credit manager focused on strategic lending, along with its co-founders Jason Colodne and Jason Beckman, continue to support the Children's Tumor Foundation and its Virtual Research Reception.
  • The event is designed to provide a preview of the research intended for presentation at the annual NF Conference.
  • The hour-long virtual event also included the opportunity for attendees to ask questions of both presenters.
  • The Annual NF Conference is the largest gathering of NF clinicians, researchers, and professionals in the world.

May is NF (Neurofibromatosis) Awareness Month, Announces Children's Tumor Foundation

Retrieved on: 
Sunday, May 1, 2022

NEW YORK, May 1, 2022 /PRNewswire-PRWeb/ -- The Children's Tumor Foundation is pleased to announce that May is NF Awareness Month. NF, short for neurofibromatosis, is a group of genetic disorders that causes tumors to grow on nerves throughout the body. NF affects 2.5 million people around the world, but many have not heard of this rare genetic disorder that can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer.

Key Points: 
  • NF Awareness Month is an opportunity to amplify the voice of all NF patients through the Children's Tumor Foundation 'Make NF Visible' initiative.
  • This year, more than 350 landmarks in 12 countries have already agreed to Shine a LIght on NF and Make NF Visible.
  • For more information on the Children's Tumor Foundation, as well as all NF Awareness Month campaign initiatives, please visit makenfvisible.org .
  • NF affects all populations equally, and while there is no cure yet, the Children's Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF.