8-year-old with Rare Disease Conquers Arctic
Canadian Organization for Rare Disorders - Arctic Quest 2011
TORONTO, Aug. 31, 2011 /CNW Telbec/ - When 8-year-old Kareem Ghadban completed the 14-km trek into the Arctic Circle, he claimed victory not just for himself but also for all people with rare disorders. Kareem was born with Neimann-Pick's Type B, a life-threatening disorder so rare it affects only 4 in a million persons.
Kareem was accompanied by his father, Ashraf, and 10 others on the 1st Arctic Quest, organized by the Canadian Organization for Rare Disorders (CORD).
According to Durhane Wong-Rieger, president of CORD and one of the trekkers, "We wanted to show that people with rare disorders can do just about anything with the right treatment and support, and what better place than the Arctic."
Arriving just 10 days after the proposed route to the Arctic Circle (Akshayuk Pass) had been closed because of dangerously high rivers, the hikers, ranging in ages from 8 to 73 years, were justifiably nervous. But the weather, beyond the usual high winds and cold night temperatures, cooperated beautifully and all completed the 32 km trek, including several river crossings, in great spirits with only minor mishaps.
One trekker who knows well the value of treatment is Darren Bidulka, a 42-year-old from BC who has Fabry's Disease, which is similar to Neimann Pick's in that fatty deposits build up in cells and tissues causing serious damage to vital organs as well life-threatening blood clots and strokes.
"Untreated, most men my age with Fabry's Disease would be on kidney dialysis," says Darren. But Darren was diagnosed in 2005, shortly before two drugs for Fabry's were approved in Canada, and he remains an avid bicyclist and skier. Having completed marathon bike rides on behalf of cancer, Darren and his wife Lisa were among the first to sign up for the Arctic Quest and to call upon supporters to raise funds for rare disorders.
Unfortunately, there is no treatment for Neimann Pick's Type B. Kareem displays some typical symptoms, including short stature and a slightly distended belly due to the fatty deposits in the liver and spleen. But hopes are pinned on research and drug development.
Participants in the Trek included 17-year-old Sarah Tompkins, whose sister has Joubert's Syndrome, and 73-year-old Bill Laughlin, walking to raise awareness of aplastic anemia, which claimed his daughter at age 12. An employee from sanofi-aventis Canada also participated in the quest. "We were gratified but not that surprised by support from healthcare companies including sanofi and Shire," said Gabriel Wong-Rieger, communications specialist for CORD, organizer of the Arctic Quest, and fellow hiker. "Healthcare companies developing treatments for rare disorders tend be become close to the patients and their families, working with them from discovery through clinical trials and continuing to provide support that extends far beyond the drug therapy."
According to the two Black Feather guides, they had never been more inspired by a group for whom reaching the Arctic Circle was such a significant event.
For all involved, the trek will remain unforgettable thanks to Sebastien Larose, a professional photographer who donated his time to capture the quest in pictures and video.
Minister of Health Leona Aglukkaq, MP from Nunavut, congratulated all voyageurs upon their return, acknowledging the importance of the journey and as a testament to Canadians "that people with rare disorders can live life to the fullest with the right treatment and support."
For Canadians with rare disorders, the hope is that Minister Aglukkaq's sentiments and those expressed by Prime Minister Harper will translate into an Orphan Drug Policy and support for rare disorders. Canada remains the only developed country without a program to support research and development for drugs for rare diseases. On 15-16 September, CORD will host its 5th national conference, entitled "Tipping Point for Rare Disorders in Canada", to urge the federal government to enact the draft policy on orphan drugs and the provincial drug programs to adopt a national framework for funding drugs for rare disorders.
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
Information about the Canadian Organization for Rare Disorders can be found at www.raredisorders.caFor further information: