Trish Carey has returned to Dalmeny, in debt and feeling a little sore after completing her 1,200-kilometre trek to raise awareness of Marfan syndrome.
Although Trish is a little disappointed with the money she raised, her spirits are still high and she is already planning another trek paddling down the Murray River for Marfan awareness.
“I’d also like to set up a National Walk for Marfan Day,” she said.
Trish arrived in Canberra after walking and cycling from Adelaide in 26 days and was met by Federal member for Eden Monaro, Mike Kelly outside Parliament House last Wednesday.
Dr Kelly then met with Trish and Marfan specialist Queensland professor Malcolm West and his wife Jennifer.
“The meeting was very successful,” Trish said.
“He (Mike Kelly) is a really great guy.”
During discussions Mike Kelly suggested that a training video about Marfan syndrome be produced and distributed to all hospitals and relevant educational institutions.
“I was impressed with his suggestion, it’s a great idea,” Trish said.
During the meeting Mike Kelly and Professor Malcolm West also discussed whether stem cell therapy might help find a cure for Marfan syndrome and the establishment of a national Australian Marfan Foundation.
The Australian Marfan Foundation (AMF) will be established as a national non profit health organisation whose objectives will be to provide public and medical awareness of Marfan syndrome and related diseases to patients, family members, medical practitioners and other healthcare providers.
The AMF can then apply to the Australian Tax Office to be recognised as a Health Promotion Charity and a registered as a deductible gift recipient.
After the hour long meeting with Mike Kelly, Trish said she felt like Dr Kelly was totally genuine and that she has his total support.
Trish has also received a letter of support from the Prime Minister Kevin Rudd extending his best wishes and appreciation for working hard to raise funds for medical research, which he described as a fitting tribute to the memory of Trish’s daughter Lisa who died from a complication of the disease.
Trish said the letter from the Prime Minister really was a special moment for Trish’s grandson Clae, Lisa’s son who accompanied his grandmother on her trek.
“He felt very proud,” Trish said.
Although Trish planned to raise money into research for Marfan syndrome the results were disappointing.
Only a little over $400 has been donated on-line and about $2000 raised from bucket donations and selling raffle tickets and stickers.
“People were having trouble finding the on-line donation site,” Trish said.
“At this point in time, I believe there have been some postal donations, but I’m not sure how much,” she said.
Trish embarked on her journey to raise awareness of Marfan syndrome and in that she has succeeded.
She chased up and received considerable media coverage along the way.
“After the first week the trepidation of speaking to the media became easier,” she said.
“You’d be surprised at the number of people I met along the way that knew someone with Marfan or had Marfan themselves.”
Marfan specialist Professor Malcolm West’s phone has run hot since Trish started her marathon ride.
“He has been contacted by doctors, podiatrists and many other professionals wanting more information about the syndrome,” Trish said.
Professor Malcolm West and his wife Jennifer flew to Canberra to meet Trish on her arrival there.
“I admire them so much; they work seven days a week and donate an inordinate amount of their own time to the cause,” Trish said.
Trish was fortunate that most of her Marfan odyssey was made possible through the kind sponsorship of the many businesses that helped her out along the way but she was unable to get sponsorship for the air-conditioned camper van and fuel she required to make her trek possible.
So Trish hired a camper van and paid for her fuel leaving Trish with an $11,000 credit card debt.
“I’m looking for a full time work job now and I’ve proved I have stamina,” she said.
Trish is very grateful to her sponsors and wishes to thank them all.
“I would also like to than the Queensgate Motel, Queanbeyan who gave us a much needed rest by sponsoring two rooms for two nights. They were just lovely,” she said.