Goal adjusted, help us meet it!
December 22, 2016
BENEFITING: M-CM NETWORK
Rare disease patients form powerful bonds online, and Jordan feels like a big sister to many young people with M-CM syndrome, an ultra-rare condition that is known to affect under 200 people worldwide. Help us send Jordan to the UK to a gathering of M-CM patient families.
Jordan is an amazing young woman who loves the online world of fandoms. She is also an avid fan fiction author with quite a following online. Jordan was born with a rare syndrome called macrocephaly-capillary malformation syndrome (M-CM) that was not accurately diagnosed until she was 21.
Since her diagnosis with M-CM she has become an active member of the online M-CM rare disease community. M-CM is a condition that was first defined in the late 1990s, so the majority of people with a diagnosis are young children. Under 200 people have been diagnosed worldwide. Because Jordan is an older person in the world with M-CM, she stands in a particularly unique place within the growing M-CM online community. Jordan greets new families coping with this diagnosis with love and cheer, and provides reassurance and comfort.
This summer, UK families plan a meeting at 2016 M-CM UK Family Day at Alton Towers, in Staffordshire. You can help us send Jordan and her family to the UK for this event.
After their trip, Jordan's father will make a short 5-10 minute documentary film about Jordan's journey that will be available online and help educate people about the experience of having M-CM.
This fundraiser supports the M-CM Network, a US 501(c)3 non-profit.