Rafael Joaquin Yanez-Munoz
Rafael's Coronavirus cycle rides for Genetic Alliance UK
Fundraising for Genetic Alliance UK - Rare Disease UK
Story
I am quite involved with a number of charities in the rare disease space. While one could think that such charities are currently a secondary concern, the opposite is closer to the truth for at least two reasons. First, people affected by rare diseases are often in at-risk groups for COVID-19, and rely on these charities for specialist information and support, as is the case for people affected by ataxia telangiectasia or spinal muscular atrophy; second, charities operate with very small margins, and a financial crisis compounded by the inability to hold the community fundraising events or open their shops if they have them, are a massive combined blow. Many charities may fold.
To support the Genetic Alliance UK (www.geneticalliance.org.uk), during lockdown I went out on my own on “Coronavirus cycle rides”. I completed 30 day-rides, from 23 to 145 Km-long, an average of 45 Km per ride at about 20 Km/h, for a total of 1,360 Km. This would be equivalent to riding from London to Spain across France. See a few pics here, and many more in Instagram at rjyanezmunoz.
Just before lockdown, I also exhibited for the Genetic Alliance UK at my local gym cafe on Saturday 29th Feb, Rare Disease Day. I showcased the fantastic work they do to support all people affected by rare, genetic or undiagnosed diseases in the UK. Thank you if you paid a visit on the day.
Finally, in the run up to Rare Disease Day I did a 1-week Gym Club-Crawl to fundraise in support of the Genetic Alliance UK. The last activity of the crawl was organised in support of Pancreatic Cancer UK. My family and I did this Spin class in memory of my beloved school friend Dr Vicente José de Luis Molero, a brilliant Spanish palliative care doctor who passed away from devastatingly quick pancreatic cancer in July 2019 at the age of 55. He leaves behind a lovely family and a school of doctors who benefitted from his clinical and teaching skills but, more than anything, from his personal approach to medicine and his patients. He was the kind of doctor we all would like to have next to us in the final hour and is sorely missed, even more now during the COVID-19 pandemic when his skills, experience and manner would have been so necessary. Rest in peace, my dear friend. We will never forget you.
More background information on the work of the Genetic Alliance UK:
Rare Diseases affect 3.5 million people in the UK, #1in17. While each disease is rare, there are more than 9,600 rare diseases, some well-known like cystic fibrosis or sickle cell anaemia, others not so much like Ataxia Telangiectasia (A-T) or Spinal Muscular Atrophy (SMA). Most rare diseases affect children, and 30% of them will not live to their 5th birthday. Each year, 6,000 SWAN (Syndromes Without A Name) children are born in the UK with diseases so rare that they do not have a name, and remain undiagnosed even after applying the best DNA technology available.
Genetic Alliance UK (www.geneticalliance.org.uk) is an umbrella organisation that groups over 200 societies of people affected by rare diseases. It is the national charity working to improve the lives of patients and families affected by genetic, rare and undiagnosed conditions. Genetic Alliance UK is home to Rare Disease UK – the national campaign for people with rare diseases and all who support them – and SWAN UK, the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. They also coordinate Rare Disease Day in the UK, always celebrated the last day of February, a rare day in a leap year. They have no government funding, entirely relying on philanthropic, corporate and fundraising income to support their activities.
I work as Professor of Advanced Therapy for Royal Holloway University of London, lecturing and running a lab devoted to the development of genetic therapies for A-T and SMA. As a volunteer, I was until very recently the Chair of the Genetic Alliance UK Board of Trustees.
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