Hey all, So I am fundraising for a Charity called DARE (Defeat Adult Refsum's Everywhere), DARE's goal is to promote world wide awareness and a better quality of life for all who are diagnosed with Adult Refsum Disease. https://www.defeatadultrefsumeverywhere.org/#:~:text=Adult%20Refsum%20Disease%20%7C%20Global%20DARE%20Foundation Refsum disease is a familial (genetic) disorder that occurs in 1 in 1,000,000 people. The disease itself is a metabolic disorder caused by faulty genes which affect the body's ability to metabolise phytanic acid (a type of fat found in foods). If undiagnosed it can be life threatening. The issue is there is only two treatment regimens for the disease and due to the lack of awareness some doctors aren't even aware of the disease itself, one of the treatments is to do with diet and so my hope is that more research can go into this so people with Refsums can live a more normal life. The reason I want to raise money for this charity is because it unfortunately affects someone very close to me, my aunty, for a while she was having problems and constantly in and out of hospital with no-one knowing what is going on, doctors included, until she was diagnosed with Refsums. This meant she could start treating it and helped her get back to doing things she previously was finding difficult such as walking and seeing, although this has gotten better slowly she still struggles with this on a daily basis as well as many other things. The sad thing is that unless she had this disease no-one in my family would know it existed, I am sure none of you would either, and we wouldn't be trying to raise money for this charity. This is why I am choosing to raise money and donate it to the Global DARE Foundation, on the 3rd of August I will be jumping out of a plane with a few colleagues from work all raising money for our own individual charities, so I would really appreciate if you could make a small contribution, which my lovely company is willing to match, so that after the jump I can send this to DARE to hopefully make people with Refsums lives a bit easier. Thank you for taking the time to read this! PS. LFEBridge doesn't have them registered so have set it as beneficiary and will be sending the money to DARE the day after the jump, to allow for any last min donations.
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