FOP Friends, formerly Friends of Oliver, is a registered charity in the United Kingdom [1] [2] established on 1 March 2012. It aims to raise funds that are needed to find effective treatments for the rare genetic condition fibrodysplasia ossificans progressiva (FOP). The charity also works to raise awareness and understanding of FOP amongst medical communities and the general public. [3]
Founded | 1 March 2012 |
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Type | Charitable organization |
Registration no. | England and Wales: 1147704 Scotland: SC046950 |
Focus | A cure for FOP |
Location |
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Area served | United Kingdom |
Chairman | Chris Bedford-Gay |
Trustees | Alison Acosta Bedford (Founding), Rachel Almeida (Founding), Helen Bedford-Gay, John Leaver, Fiona White, Nicky Williams |
Website | www |
Friends of Oliver was founded when Chris and Helen Bedford-Gay received the diagnosis that their son Oliver had the rare genetic condition fibrodysplasia ossificans progressiva, or FOP. With FOP being such a rare disease, there was no UK charity dedicated to raising funds for research into effective treatments/a cure for the condition. Chris, along with his sisters-in-law Alison and Rachel, were the founding trustees of the charity. The original intention of Friends of Oliver was to keep family and friends updated with breakthrough news, to thank them for their continued support, and to celebrate Oliver's milestones. However, the charity grew significantly and an increased number of families affected by FOP began getting in touch. Friends of Oliver evolved into FOP Friends. This brought together the whole UK FOP community with the same goal: a cure for FOP.
In May 2014, FOP Friends held a UK FOP Conference and Family Gathering. An event like this had not taken place since 2000. The event gathered together families, from all over the UK, that were living with FOP. Presentations were given by doctors and researchers from the University of Oxford, England, and University of Pennsylvania, USA, as well as IFOPA and Clementia Pharmaceuticals. Frederick Kaplan, Robert Pignolo, and Eileen Shore from the University of Pennsylvania also ran clinical appointments for patients with FOP. [4]
In May 2016, FOP Friends held their second UK FOP Conference and Family Gathering. This was funded by a successful grant from the Big Lottery Fund. [5] [6] Families, researchers and clinicians came together with over one hundred delegates present on the day. Presentations were given on the most recent research updates and Q&A workshops took place in the afternoon. [7]
In 2017, FOP Friends partnered with Genetic Disorders UK. [8] Genetic Disorders UK is a small registered charity that aims to support and improve the lives of individuals who live with a rare genetic disorder [9]
In March 2018, FOP Friends were awarded a grant, for the third Biennial UK FOP Conference & Family Gathering, from Big Lottery Fund. [10]
FOP Friends received a Genetics Disorders UK Jeans for Genes Day grant, to provide a residential weekend at Centre Parcs for 13 families in 2019. [11] [12]
All the money raised by FOP Friends goes directly to supporting the research into finding a treatment and a cure for Fibrodysplasia Ossificans Progressiva.
Researchers at the University of Oxford were instrumental in the discovery of the gene responsible for FOP in 2006. Professor Matthew Brown, a geneticist at Oxford, collaborated with Professor Jim Triffit, a member of the FOP team, to investigate the genetic linkage between families with inherited cases of FOP. This allowed the Oxford team to map the precise location of the FOP gene on the human chromosomes. The gene, a BMP receptor termed ACVR1, was mapped to chromosome 2 and more precisely to a small region between bands 23–24. The current University of Oxford FOP Research Team, established in 2009, is led by Professor Jim Triffit and Alex Bullock. [13]
The research team at Oxford University is entirely funded with money raised from patients, family and friends. [14] The team needs £120,000 per annum to fund the work of two post-doctoral scientists. Donations from FOP Friends accounts for around 70% of the total needed. [15]
The FOP Friends charity has raised over £135,000 to support FOP research in the UK. [16]
In 2017, IFOPA and FOP Friends funded new research at the University of Oxford. A research grant of $26,400 was pledged. [17]
In May 2019, Helen Bedford-Gay published the book, 'Supporting a child with FOP: a Practical guide to their learning journey'. The guide informs educators, schools, and families about how to adapt school life for a child with FOP. The book demonstrates how to make sure a child with FOP has an engaging school life and how to ensure the child is included throughout their school career. The publication stresses the importance of social interaction for a child with FOP. The book covers advocating for the child, medical considerations, family support and practical tips. The text aims to provide information, support, and encouragement for children and practitioners alike to enable them to achieve their potential. The book was supported by a grant from Regeneron Pharmaceuticals. [18]
On 23 December 2014, CBBC presenter Katie Thistleton appeared on Celebrity Mastermind and picked FOP Friends as her chosen charity. [19] [20]
BBC's Casualty consulted with FOP Friends on an episode with a FOP storyline that aired on 17 October 2015. [21]
FOP Friends' chairman, Chris Bedford-Gay is one of the co-authors of the medical article The Natural History of Flare-Ups in Fibrodysplasia Ossificans Progressiva (FOP): A Comprehensive Global Assessment. [22]
In January 2017, Chris Bedford-Gay and FOP Friends received a special acknowledgement in Fiona Cummins' debut novel 'Rattle'. Bedford-Gay consulted on the book as one of the main characters had FOP [23]
#FunFeet4FOP is a social media campaign founded by FOP Friends that aims to raise awareness for FOP on International FOP Awareness Day. [24] This day takes place on the 23 April every year and coincides with the discovery of ACVR1 gene that causes FOP. The aim of #FunFeet4FOP is to inform people that an important early indication of FOP is malformed big toes at birth. People around the world on the 23 April post photos of their feet to show their support and raise awareness of FOP.
Year | Award | Category | Result | Reference |
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2017 | Altrincham & Sale Chamber of Commerce Awards | Charity of the Year | Runner Up | [25] [26] |
2018 | 10 Downing Street's Points of Light Award | Winner | [27] | |
2019 | Jeannie Peeper Award | Outstanding International Leadership Award | Winner | [28] |
2019 | BBC Community Heroes Awards | Fundraiser - Nicky Williams | Finalist | [29] |
2022 | British Empire Medal | Helen Bedford-Gay: For services to People Living with Fibrodysplasia Ossificans Progressiva and their Families | Winner |
Cancer Research UK (CRUK) is the world's largest independent cancer research organisation. It is registered as a charity in the United Kingdom and Isle of Man, and was formed on 4 February 2002 by the merger of The Cancer Research Campaign and the Imperial Cancer Research Fund. Cancer Research UK conducts research using both its own staff and grant-funded researchers. It also provides information about cancer and runs campaigns aimed at raising awareness and influencing public policy.
The green ribbon can have a variety of symbolic meanings.
The Christian Institute (CI) is a charity operating in the United Kingdom, promoting a Christian viewpoint, founded on a belief in Biblical inerrancy. The CI is a registered charity. The group does not report numbers of staff, volunteers or members with only the Director, Colin Hart, listed as a representative. However, according to the accounts and trustees annual report for the financial year ending 2017, the average head count of employees during the year was 48 (2016:46).
Ossification in bone remodeling is the process of laying down new bone material by cells named osteoblasts. It is synonymous with bone tissue formation. There are two processes resulting in the formation of normal, healthy bone tissue: Intramembranous ossification is the direct laying down of bone into the primitive connective tissue (mesenchyme), while endochondral ossification involves cartilage as a precursor.
Fibrodysplasia ossificans progressiva, also called Münchmeyer disease or formerly myositis ossificans progressiva, is an extremely rare connective tissue disease in which fibrous connective tissue such as muscle, tendons, and ligaments turn into bone tissue. It is the only known medical condition where one organ system changes into another. It is a severe, disabling disorder with no cure or treatment.
Myositis ossificans comprises two syndromes characterized by heterotopic ossification (calcification) of muscle. The World Health Organization, 2020, has grouped myositis ossificans together with fibro-osseous pseudotumor of digits as a single specific entity in the category of fibroblastic and myofibroblastic tumors.
Heterotopic ossification (HO) is the process by which bone tissue forms outside of the skeleton in muscles and soft tissue.
Ipsen is a French biopharmaceutical company headquartered in Paris, France, with a focus on transformative medicines in three therapeutic areas: oncology, rare disease and neuroscience. Ipsen is one of the world’s top 15 biopharmaceutical companies in terms of oncology sales.
Activin A receptor, type I (ACVR1) is a protein which in humans is encoded by the ACVR1 gene; also known as ALK-2. ACVR1 has been linked to the 2q23-24 region of the genome. This protein is important in the bone morphogenic protein (BMP) pathway which is responsible for the development and repair of the skeletal system. While knock-out models with this gene are in progress, the ACVR1 gene has been connected to fibrodysplasia ossificans progressiva, a disease characterized by the formation of heterotopic bone throughout the body. It is a bone morphogenetic protein receptor, type 1.
Bone disease refers to the medical conditions which affect the bone.
Jeans for Genes Day is a national fundraiser held in Australia and the United Kingdom. The two fundraisers are not associated with one another and raise money for different organisations.
Harry Raymond Eastlack, Jr. was the subject of the most recognized case of FOP from the 20th century. His case is also particularly acknowledged, by scientists and researchers, for his contribution to medical advancement. After suffering from a rare, disabling, and currently incurable genetic disease, Eastlack decided to have his skeleton and medical history donated to the Mütter Museum of the College of Physicians of Philadelphia in support of FOP research. His skeleton is one of the few FOP-presenting, fully articulated ones in existence, and it has proved valuable to the study of the disease.
BioCryst Pharmaceuticals, Inc. is an American pharmaceutical company headquartered in Durham, North Carolina. The company is a late stage biotech company that focuses on oral drugs for rare and serious diseases. BioCryst's antiviral drug peramivir (Rapivab) was approved by FDA in December 2014. It has also been approved in Japan, Korea, and China.
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Progressive osseous heteroplasia is a cutaneous condition characterized by cutaneous or subcutaneous ossification.
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a US-based 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). IFOPA's mission is to fund research to find a cure for FOP while supporting, connecting, and advocating for individuals with FOP and their families, and raising awareness worldwide. IFOPA is governed by a volunteer board of directors which may range in number from 9 to 15, at least one of whom must have FOP. The association's location is 1520 Clay St., Suite H2, North Kansas City, MO, 64116, part of the Kansas City, Missouri metropolitan area.
Genetic Alliance UK is a national charity and an alliance of over 200 patient organisations, supporting those affected by genetic conditions. Genetic Alliance UK's aim is to improve the lives of people affected by genetic conditions, ensuring that high quality services and information are available to all who need them.
Palovarotene, sold under the brand name Sohonos, is a medication used for the treatment of heterotopic ossification and fibrodysplasia ossificans progressiva. It is a highly selective retinoic acid receptor gamma (RARγ) agonist.
Frederick S. Kaplan is an American medical doctor specializing in research of musculoskeletal disorders such as fibrodysplasia ossificans progressiva (FOP).
Eileen M. Shore is an American medical researcher and geneticist specializing in research of muscoskeletal disorders such as fibrodysplasia ossificans progressiva.