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PDG Nancy introduced our Guest Speaker, David Kron, who is Executive Director of the Cerebral Palsy Association of Manitoba, whose mission is to enrich the lives of individuals affected by Cerebral Palsy through programs, advocacy, education and peer support. As executive director, David is responsible for an annual budget in excess of $350,000, the day to day operation of the association, and overseeing the COHABIT Housing Initiative as well as 3 major fundraising events in Winnipeg & Brandon. In addition, David is also involved with the following community organizations: “Barrier Free Manitoba” steering committee, the “Children’s Coalition”, the “Social Planning Council of Winnipeg”, “Make Poverty History Manitoba” working group, and “Disability Matters Votes” steering committee. These days, much of David’s efforts involve advocating –on both a systemic level and on an individual level to make people’s lives just that little bit better. He says he is “CP Proud”. Cerebral Palsy (CP) doesn’t affect who he is, it just happens to be something that he has to deal with. His life began a month earlier than his expected birth date. He weighed only two pounds at birth and spent his first six months in the hospital. However, at age 54, he has done everything that everybody else has done, including things like going around the world paddling a kayak, visiting Tonga, Haida Gwaii, Mexico, Nunavut …. His philosophy is “It is what it is – you deal with what you’re born with, you deal with your circumstances.” He said he was lucky to have had loving parents who got him through everything and that there can be a lot more worse things to deal with in life than cerebral palsy. The CP Association was started in 1955 by a bunch of parents as a parent support group and was called the Society for Crippled Children at the time. In 1974, a group broke away and formed the CP Association which consisted of 2 employees and two contracted people. David was a volunteer on the Board of the Cerebral Palsy Association of Manitoba in 1994, president in 1999, resigned in 2001 because he got a job as Territory Sales Manager selling bikes with Freedom Concepts, travelling all over North America (spending 32 weeks on the road). The Association does not get any government money. Since 1989 all funds are raised by the Association with events like the Cerebral Palsy Stationary Bike Race that runs from 9:30 AM to 4:30 PM (with teams of 4 riders each riding for 25 minutes and raising money) which has been taking place in Winnipeg (raising $174,000 this past September) and then again in Brandon (raising $58,000). The Association has a trailer that hauls about 80 bikes. Last year, $75,000 of the funds raised went to equipment grants to improve the lives of kids and adults affected by CP. Funds also support scholarships and provide a personal support program to help persons get out into the community to advocate on behalf of the human rights of disabled persons. Cerebral Palsy is caused by brain damage either at birth or before birth due to lack of oxygen. The “wiring” is all there, but the signal from the brain - in David’s case, to his leg - doesn’t work. His CP is called spastic diplegia and apparently results in considerably higher energy expended by the muscles in his legs when he walks (compared with the energy expended by regular walkers) – which means that he can eat a lot and not gain weight. He claims it’s a great weight loss program. CP can affect any muscle in the body – speech, swallowing, all four limbs, one limb – and be as simple as having a little wonky gait. CP happens in about 1 in 500 births; 1 in 400 births when one has multiple births (i.e. twins, triplets, etc.). What causes CP is not known and there is no treatment or cure for CP. Current research in Toronto by Dr. Michael Fehlings is looking into causing CP in mice and then trying to fix it by getting stem cells into the brain to rewire it. CO-HABIT is a new initiative that’s about 1.5 years old. It is an apartment block that is being built for people with CP (or any kind of disability) – a dignified and “happening” place for young adults to get them out of living in their parents’ basements or in a personal care home. A pool, a bar, a movie theatre, and a chef – with staff to take care of people are planned for Co-Habit. The Cerebral Palsy Association will need to fundraise to supplement any provincial funding a renter currently gets to pay for the Co-Habit apartment rental. Alternatively, a parent may be able to buy a condo for their child. The CP Association is looking at all sorts of creative models to handle apartment rental. The CP Association has about 375 members and a mailing list of about 800. There are many people whose CP is mild and they don’t contact the CP Association because they don’t need the support. A good guess is that there are about 3300 people in Manitoba with Cerebral Palsy. Lloyd thanked David Kron for his inspiring presentation and handed him his cane, which had fallen on the floor of the stage. He went on to let us know that he has a granddaughter in Ontario who has cerebral palsy. She weighed 3 pounds when she was born. Lloyd added that she is “One Spirited Individual!” who does all things with great enthusiasm. |