Wheelin For Phelan 2018
Donation protected
My son, Ted, was diagnosed with Phelan McDermid Syndrome when he was he was 2 years old. The doctors knew very little about this syndrome, in fact their advice to us was "Google it!".
Turns out there are only around 1400 cases worldwide and only 72 here in Australia.
Needless to say P-MS is classed as a 'rare' syndrome and as such has limited funding.
Essentially P-MS is the deletion of part of Chromosome 22. This means intellectual disability, delayed or absent speach, autism, heart problems, seizures and gastrointestinal problems are common place amongst sufferers.
Wheelin for Phelan is hoping to make a difference by raising funds for the Phelan-McDermid Syndrome Foundation of Australia. The foundation helps families with P-MS kids and young adults by providing family support, information and raising awareness.
Last years ride raised nearly $30,000 and enabled PMSF Australia to bring specialist doctors over from the USA to attend the PMSF Conference in Sydney. The conference was a huge success with parents getting direct access to Dr Katie Phelan and Dr Curtis Rogers who are leading physicians in the field. Curtis and Katie also took time out to talk dircetly with the doctors of Australian PMS kids.
For 2018 we will be repeating the ride. Leaving Sydney on the 23rd September we will travel around 1100km by bicycle, climbing 14,000m, before arriving back in Brisbane on the 29th September. As we found out last year the ride is no easy task but it pales into insignificance compared to the daily struggles faced by PMS families.
Please join our journey through our Facebook page (Wheelin for Phelan) or our Instagram (@wheelinforphelan) and help us raise some much needed funds to help our P-MS families and promote the Foundations good work.
Turns out there are only around 1400 cases worldwide and only 72 here in Australia.
Needless to say P-MS is classed as a 'rare' syndrome and as such has limited funding.
Essentially P-MS is the deletion of part of Chromosome 22. This means intellectual disability, delayed or absent speach, autism, heart problems, seizures and gastrointestinal problems are common place amongst sufferers.
Wheelin for Phelan is hoping to make a difference by raising funds for the Phelan-McDermid Syndrome Foundation of Australia. The foundation helps families with P-MS kids and young adults by providing family support, information and raising awareness.
Last years ride raised nearly $30,000 and enabled PMSF Australia to bring specialist doctors over from the USA to attend the PMSF Conference in Sydney. The conference was a huge success with parents getting direct access to Dr Katie Phelan and Dr Curtis Rogers who are leading physicians in the field. Curtis and Katie also took time out to talk dircetly with the doctors of Australian PMS kids.
For 2018 we will be repeating the ride. Leaving Sydney on the 23rd September we will travel around 1100km by bicycle, climbing 14,000m, before arriving back in Brisbane on the 29th September. As we found out last year the ride is no easy task but it pales into insignificance compared to the daily struggles faced by PMS families.
Please join our journey through our Facebook page (Wheelin for Phelan) or our Instagram (@wheelinforphelan) and help us raise some much needed funds to help our P-MS families and promote the Foundations good work.
Organizer
Oliver Elsworth
Organizer
Bridgeman Downs QLD
