February 24, 2014
Governor Jack Dalrymple signed a proclamation designating Feb. 28, 2014, Rare Diseases Day in North Dakota. This year's theme is "Alone we are rare; together we are strong!"
|North Dakota Governor Jack Dalrymple signs Rare Diseases Day Proclamation: Governor Jack Dalrymple (seated center), with members of the North Dakota Rare Diseases organization. From left, seated: George Perrin and Kathy Perrin, co-founders of ND Rare Diseases. Back, left to right, Jodi Roller, Stacie Iken, Karel Sovak, Kathy Stromstad and Jayne Hardy. |
North Dakota Rare Diseases, a nonprofit organization recently founded in Bismarck, requested the designation to increase awareness of rare diseases to the citizens of North Dakota.
A display at the Capitol from 11 a.m. to 1 p.m. that day will provide additional information on rare diseases. Additionally, a launch of wish/prayer lanterns is planned at Prairie West Golf Course in Mandan beginning at 7 p.m. on the first hole of the course. Shelter is provided in case of cold weather.
Kathy Perrin and her husband, George, co-founded the organization after Kathy learned she has severe chronic idiopathic neutropenia - a rare blood disorder characterized by abnormally low levels of certain white blood cells (neutrophils) in the body. Neutrophils play an essential role in fighting bacterial infections by surrounding and destroying invading bacteria. The cause of the disease is unknown, which makes treatment a challenge, and clinical trials for the disease have stopped due to loss of funds. Only 650 people are known to have this disease in the United States.
"We started the organization due to the lack of information on clinical trials and education on certain rare diseases," said Kathy, a former longtime occupational therapy faculty member and administrator at the University of Mary. "We want to help with genetic testing in some capacity and hopefully the organization and this proclamation can help bring more attention, more funding and more chances for cures - not only for my disease but for all rare diseases."
According to the National Organization for Rare Diseases (NORD) and the National Institutes of Health, there are approximately 7,000 rare diseases in the United States. Diseases are classified as rare if they affect fewer than 200,000 people. It is estimated that a classified rare disease affects one in 10 Americans. Additionally, of nearly 30 million people affected, more than 50 percent are children. Global Genes estimates many of these children will not live to see their fifth birthday. Global Genes also estimates that 95 percent of the rare diseases do not have a single FDA-approved drug treatment.
For more information on North Dakota Rare Diseases, a 501(c)3 designed to educate and advocate on behalf of persons with rare diseases in North Dakota, contact the group's president, Karel Sovak, at 701- 355-8042.