Neurofibromatosis

Riding for a Reason: Colbeck Capital Sponsors the Children’s Tumor Foundation in TD Five Boro Bike Tour

Retrieved on: 
Wednesday, May 1, 2024
Children, Sports, Professional Services, Health, Philanthropy, Neurology, Fund Raising, Genetics, Biking, Cycling, Consumer, Finance, Neurofibromatosis, CTF, Schwannomatosis, Research, NF, Neoplasm, Diagnosis, Five Boro Bike Tour, Road

Colbeck Capital Management (“Colbeck”) today announced its ongoing support of the Children’s Tumor Foundation (“CTF” or the “Foundation”) through its sponsorship of CTF’s NF Endurance Team in the annual TD Five Boro Bike Tour.

Key Points: 
  • Colbeck Capital Management (“Colbeck”) today announced its ongoing support of the Children’s Tumor Foundation (“CTF” or the “Foundation”) through its sponsorship of CTF’s NF Endurance Team in the annual TD Five Boro Bike Tour.
  • CTF is one of the ride’s official charity partners and along with its sponsors, including Colbeck Capital and Jason Colodne, is supporting the TD Five Boro Bike Tour to promote awareness of and fundraising for its vision of ending NF, a group of genetic conditions that causes tumors to form throughout the body.
  • Through events like the TD Five Boro Bike Tour, CTF aims to drive research, expand knowledge, and advance care for the NF community.
  • The TD Five Boro Bike Tour gives riders the unique experience of cycling through all five of the city’s boroughs across 40 miles of car-free streets while bringing awareness to the need for safer biking accommodations throughout the city.

Opna Bio Presents Promising Preclinical Data in Multiple Myeloma with OPN-6602 and in Malignant Mesothelioma with OPN-9840 Showing Significant Tumor Growth Inhibition at the American Association of Cancer Research Annual Meeting

Retrieved on: 
Wednesday, April 10, 2024
Research, Venture Capital, Clinical Trials, Professional Services, Biotechnology, Health, Pharmaceutical, Science, Oncology, CREB-binding protein, NF2, Dexamethasone, FDA, MYC, TGI, Cancer, Bone marrow, Abdomen, Multiple myeloma, Mouse, MYB, Mesothelioma, EP300, Streets of Rage, Doctor of Philosophy, IND, Glomus tumor, TEAD, FMRP, Therapy, BRAF, CBP, Thomas Jefferson University, Patient, Neurofibromatosis, Hippopotamus, Neoplasm, Standard of care, AACR, E1A, IRF4

Data were shared at the American Association of Cancer Research (AACR) Annual Meeting, taking place April 5-10, 2024 in San Diego.

Key Points: 
  • Data were shared at the American Association of Cancer Research (AACR) Annual Meeting, taking place April 5-10, 2024 in San Diego.
  • Multiple myeloma is an aggressive blood cancer derived from malignant plasma cells in the bone marrow.
  • "We are excited to begin our Phase 1 study of OPN-6602 in patients with multiple myeloma this summer.
  • Malignant mesothelioma is a rare and aggressive cancer that primarily affects the lining of the lungs or abdomen.

Advocating for Awareness and Empowerment: Jason Colodne and Colbeck Capital Sponsor the Children's Tumor Foundation NF Summit 2024

Retrieved on: 
Tuesday, April 9, 2024
Professional Services, Oncology, Health, Finance, Pharmaceutical, Biotechnology, Friends, Schwannomatosis, Education, Patient, Neoplasm, Research, NF, San Antonio River Walk, Neurofibromatosis, Empowerment, Drug development, CTF, DSM-IV codes, Pharmaceutical industry

Colbeck Capital Management (“Colbeck”) today announced its ongoing support of the Children’s Tumor Foundation (“CTF” or the “Foundation”) through sponsorship of the CTF NF Summit 2024, the largest educational gathering in the neurofibromatosis (“NF”) and schwannomatosis community.

Key Points: 
  • Colbeck Capital Management (“Colbeck”) today announced its ongoing support of the Children’s Tumor Foundation (“CTF” or the “Foundation”) through sponsorship of the CTF NF Summit 2024, the largest educational gathering in the neurofibromatosis (“NF”) and schwannomatosis community.
  • This year’s summit includes a renewed focus on the role of patients and care advocates in advancing NF research, contributing to CTF’s goal of bringing new treatments to the market.
  • Supporters like Jason Colodne and Colbeck Capital have enabled CTF to continue driving research and awareness through innovative initiatives and events like the NF Summit.
  • More information regarding CTF and NF Summit 2024 can be found at https://www.ctf.org/ .

A Score for Detroit: Gilly's Clubhouse Debuts April 5, in Time for Tigers' Home Opener

Retrieved on: 
Wednesday, March 13, 2024
Friends, M-1 (Michigan highway), National Football League Draft, Coffee, Clubhouse, Social media, Tailgate party, Grant's, Tiger, AJ Gilbert, Website, Life, Neurofibromatosis, Detroit Tigers, Cheese, Gilly's, Sport, AJ, Collection, NFL, Interior design

DETROIT, March 13, 2024 /PRNewswire/ -- Gilly's Clubhouse, a Detroit-based upscale sports bar where every seat in the house offers a front row experience, today announced it will open on Friday, April 5, 2024. The 10,000+ square-foot sports lover's dream is located at 1550 Woodward Avenue and features a 120-square-foot television, unique Detroit memorabilia, and custom artwork from local artists. The menu includes classic American gameday fare along with healthy options. 

Key Points: 
  • Gilly's is named after Dan and Jennifer Gilbert's son, Nicolas (whose friends affectionately nicknamed him "Gilly").
  • Gilly's was originally the vision of Nick himself who worked on the project for the last couple years of his life.
  • Nick's brothers, Grant and AJ Gilbert, have taken an active role in helping to bring Gilly's to market.
  • For additional information about Gilly's Clubhouse & Rooftop, please visit, gillysdetroit.com and follow on Instagram, @gillysdetroit .

Acclaimed Clinical Geneticist Dr. Bruce Korf Honored with 2024 David L. Rimoin Lifetime Achievement Award in Medical Genetics from the ACMG Foundation for Genetic and Genomic Medicine

Retrieved on: 
Wednesday, March 13, 2024
Department of Defence, Friends, Patient, Medical genetics, Travel, Child, Neurofibromatosis, Practice, UAB, Gene expression, Dean (education), Education, Rockefeller University, Seed, NF, NIH, American College, Pediatrics, Person, Karyotype, MD–PhD, Boston Children's Hospital, Principle, Birmingham School of Law, Neurology, FACOG, Genetics, Cornell University, American Journal, Research, Hospital, University, Human genetics, Student, Publication, DRS, ACMG, Book, Genetic distance, DSM-IV codes, Diagnosis, FACMG, Empathy, Montefiore Medical Center, Distinguishing, Mouse, Hope, Doctor of Philosophy, Life, Genetic, Bangladesh Technical Education Board, Physician, Nursing

BETHESDA, Md., March 13, 2024 /PRNewswire/ -- Renowned clinical geneticist Bruce Korf, MD, PhD, FACMG, has been named the recipient of the 2024 ACMG Foundation for Genetic and Genomic Medicine's David L. Rimoin Lifetime Achievement Award in Medical Genetics.

Key Points: 
  • BETHESDA, Md., March 13, 2024 /PRNewswire/ -- Renowned clinical geneticist Bruce Korf, MD, PhD, FACMG, has been named the recipient of the 2024 ACMG Foundation for Genetic and Genomic Medicine's David L. Rimoin Lifetime Achievement Award in Medical Genetics.
  • Dr. Korf is an authentic, kind and ethical human being whose life and career in medical genetics are unparalleled."
  • "Dr. Korf's extraordinary accomplishments in clinical genetics, neurofibromatosis, and genomics, as well as his dedication to education make him a well deserving winner of the David Rimoin Lifetime Achievement Award.
  • Before he died, David appreciated the opportunity to work with Bruce first-hand in the editing of Principles and Practice of Medical Genetics as well as on numerous committees for the ACMG.

Saksey's Cocktail Lounge - Detroit's Most Intimate Room - Opening Spring 2024

Retrieved on: 
Wednesday, February 14, 2024
Smoke, Love, Neurofibromatosis, Table, Food, Glass, Clubhouse, M-1 (Michigan highway), Drinking establishment

DETROIT, Feb. 14, 2024 /PRNewswire/ -- Just off Woodward Avenue is an unadorned alleyway that will soon lead to Detroit's most intimate room, Saksey's. This new cocktail lounge is named after the Detroit bar owned and operated by Dan Gilbert's father in the 1970s. Saksey's will be in the lower level of Gilly's Clubhouse & Rooftop, the sports bar that is the vision of Nick Gilbert, who passed away from neurofibromatosis in May 2023. Saksey's is slated to open to the public in Spring 2024.

Key Points: 
  • Saksey's is an elegant lounge with opulent drinks, food, and décor
    DETROIT, Feb. 14, 2024 /PRNewswire/ -- Just off Woodward Avenue is an unadorned alleyway that will soon lead to Detroit's most intimate room, Saksey's .
  • This new cocktail lounge is named after the Detroit bar owned and operated by Dan Gilbert's father in the 1970s.
  • Saksey's is slated to open to the public in Spring 2024.
  • The cozy, contemporary room boasts nostalgic reference points as guests are transported back in time through a bespoke alleyway entrance.

Gilly's Clubhouse and Rooftop Unveil Renderings; Set to Open in Downtown Detroit Spring of 2024

Retrieved on: 
Tuesday, November 21, 2023
Love, Food, Sport, ROCK, Partnership, M-1 (Michigan highway), Gilly's, NF, Heart, Clubhouse, Nightclub, Neurofibromatosis

DETROIT, Nov. 21, 2023 /PRNewswire/ -- Gilly's Clubhouse and Rooftop today announced its planned opening for the Spring of 2024. Operated by Josh Lang's 7OH2 Hospitality, in partnership with ROCK, Gilly's Clubhouse and Rooftop promises to revolutionize the downtown Detroit food and beverage scene. With its signature tagline – "What's not to like?" the elevated hospitality concept brings a multi-faceted dining and sports entertainment experience to the city, embodying the true spirit of Detroit and its love for food, drinks and sports.

Key Points: 
  • DETROIT, Nov. 21, 2023 /PRNewswire/ -- Gilly's Clubhouse and Rooftop today announced its planned opening for the Spring of 2024.
  • Operated by Josh Lang's 7OH2 Hospitality, in partnership with ROCK, Gilly's Clubhouse and Rooftop promises to revolutionize the downtown Detroit food and beverage scene.
  • Nick was a huge advocate for Detroit and had a long-time dream of bringing a sports bar to downtown Detroit.
  • Located at 1550 Woodward Avenue in the heart of Downtown Detroit, the 10,000 square foot Gilly's will feature both indoor and outdoor bar concepts.

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
Neurofibromatosis, Partnership, Global Coalition Against Pneumonia, COVID-19, Learning, Biomarker, Research, GBM, Organization, IMI, Cancer, Schwannomatosis, Neurofibroma, NF, Patient, Paratriathlon, Children's Tumor Foundation, Deafness, Clinical trial, NF1, IHI, CTF, DSM-IV codes, Neoplasm, Glioblastoma, Library, Glioma, EU, Innovative Medicines Initiative, Pharmaceutical industry, SWN

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
News, Partnership, NF, Children's Tumor Foundation, MSU, Life, Health, AUC, Neoplasm, Stroke, Spinal cord, Book Tower, Deformity, Neurofibromatosis, GFF, Research, Rehabilitation, Brain, Paratriathlon, Rocket Mortgage, Ohio State University Health Sciences Center for Global Health, Science, U.S. News & World Report, NYSE, Ryan AbilityLab, Henry Ford Health, Detroiters, Investment, Patient, Organoid, Traumatic brain injury, Child, Detroit City Council, Michigan State University, Michigan State University College of Osteopathic Medicine, NF1, Family, NIH, Henry Ford Hospital, DSM-IV codes, Disease, Hospital, Interior design, Pharmaceutical industry, Nursing, Grand Marais Road (Windsor, Ontario)

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.

Newly Named Penny Doerge Adaptive Academy at HSS to Offer More Trips, Activities to Pediatric Patients

Retrieved on: 
Wednesday, August 30, 2023
Lighthouse, Heart, Human, Dance, Pediatrics, Chelsea Piers, Skiing, Orthopedic surgery, PDAA, Neurofibromatosis, Cerebral palsy, Movement, Creativity, Hospital for Special Surgery, Motion, MD, Patient, HSS, Personality, Infant, Diagnosis, Hospital, Memory, Nursing, Trustee

The newly named Penny Doerge Adaptive Academy (PDAA) honors the memory of HSS patient Penny Doerge and will continue to offer trips and recreational and creative activities such as rock climbing, surfing, skiing, dancing and other exciting adventures to pediatric patients at no cost, as it has for the past decade.

Key Points: 
  • The newly named Penny Doerge Adaptive Academy (PDAA) honors the memory of HSS patient Penny Doerge and will continue to offer trips and recreational and creative activities such as rock climbing, surfing, skiing, dancing and other exciting adventures to pediatric patients at no cost, as it has for the past decade.
  • The Penny Doerge Adaptive Academy focuses on three themes that are central to how Penny lived her life: motion, expression and inclusion, explained Kate Doerge, Penny's mother and member of the HSS Board of Trustees, Pediatric Council, and Co-Chair of the HSS Board of Advisors.
  • Additional support will enable the Academy to expand its offerings to all HSS patients ranging in age from 3 to 22.
  • "It has become a very special part of HSS, bringing comfort, excitement and joy to our youngest patients."