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Two Families Fight Against Rare Diseases

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It's everyone's nightmare to be diagnosed with a disease. But imagine being diagnosed with a rare disease, one for which there is no proven cure or little medical research about. Imagine the person afflicted with this disease is a child. This is just the situation two families are dealing with, one in New York, the other in Kentucky. The two families' response under such circumstances has been inspiring.

When Caren and Dan Mahar of New York learned their daughter Katie had been afflicted with xeroderma pigmentosum, they didn't know where to turn. Individuals with XP must avoid the sun and bright lights because their bodies do not have the ability to repair skin exposed to ultraviolet rays. So what would be normal exposure to sunlight for anyone else can be catastrophic for a person with XP. The odds of an XP patient getting cancer are great if exposed to ultraviolet light. They must therefore adjust their lifestyle to this condition by staying indoors during daylight hours. While indoors, special window shades and low-wattage lights are necessary for XP sufferers. At least 150 people in the United States and 3,000 people worldwide are afflicted with this disease. There is no known cure.

In 1995, the Mahars founded the XP Society to help patients and families dealing with the disease. The society supports medical research for finding a cure as well as providing information to XP patients. The biggest single act of the XP Society is its Camp Sundown, where patients and their families gather twice a year. The hours of the camp are structured so all activities take place at night when it is safe for XP patients to be outside. Without a dime of federal funding, the XP Society has waged a sustained, organized campaign of information and support for XP sufferers.

Members of the Hollywood community are also active in supporting the XP Society. Actress and director Kimberly Williams-Paisley produced an award winning short film about the disease titled Shade. The XP Society is helping distribute copies of the film to increase public awareness about the disease. Such awareness is crucial to support research into rare conditions such as XP. So little is known about such diseases that attracting the public's attention to raise funds for research is very difficult. It is more likely that an individual will give money to support research into more common illnesses such as heart disease or AIDS.

However, the Mahars are quick to point out that "all study on XP will help all people in the epidemic levels of skin cancer worldwide." The Mahars are, of course, not alone in their efforts to raise awareness and funds into a rare disease.

In Kentucky, during 2003, Kara and Dan Heck received the devastating news that their 3-year-old daughter Malia had a rare spinal cord tumor. The condition, called intramedullary astrocytoma, was so rare that the Hecks had to go to Baltimore to find a doctor to treat the condition. A surgery that removed most of the tumor was performed on Malia. Today, Malia is leading a healthy, active life. However, the tumor could return, as there are small amounts of it remaining in her spinal cord. The Hecks consider it a race against time to find a cure, not just for their daughter, but also for other sufferers of this disease.

In 2004 they founded the Cord Foundation, which hopes to raise awareness of spinal cord tumors and support medical research for a cure. Cord stands for Cure for Others through Research and Development. Currently, research in treating spinal cord tumors is being conducted by Dr. George Jallo at Baltimore's Johns Hopkins Hospital.

The Cord Foundation seeks to raise money to support that research. The Heck family believes research into spinal cord tumors also will benefit the treatment of other types of tumors.

Two families nearly 800 miles apart have similar missions: to raise public awareness and support research into two rare medical conditions. It's a tough chore for both the Mahars and the Hecks. Any support for their two organizations, no matter how small, will help those afflicted with these diseases and encourage groundbreaking research to discover a cure.

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About William Lambers

William Lambers is the author of several books including Ending World Hunger: School Lunches for Kids Around the World. This book features over 50 interviews with officials from the UN World Food Programme and other charities discussing school feeding programs that fight child hunger. He is also the author of Nuclear Weapons, The Road to Peace: From the Disarming of the Great Lakes to the Nuclear Test Ban Treaty, Open Skies for Peace, The Spirit of the Marshall Plan: Taking Action Against World Hunger, School Lunches for Kids Around the World, The Roadmap to End Global Hunger, From War to Peace and the Battle of Britain. He is also a writer for the History News Service. His articles have been published by newspapers including the Cincinnati Enquirer, Des Moines Register, the New York Times, San Francisco Chronicle, Buffalo News, San Diego Union Tribune, the Providence Journal, Free Lance-Star (VA), the Bakersfield Californian, the Washington Post, Miami Herald (FL), Chicago Sun-Times, the Patriot Ledger (MA), Charleston Sunday Gazette Mail (WV), the Cincinnati Post, Salt Lake Tribune (UT), North Adams Transcript (MA), Wichita Eagle (KS), Monterey Herald (CA), Athens Banner-Herald (GA) and the Duluth News Journal. His articles also appear on History News Network (HNN) and Think Africa Press. Mr. Lambers is a graduate of the College of Mount St. Joseph in Ohio with degrees in Liberal Arts (BA) and Organizational Leadership (MS). He is also a member of the Feeding America Blogger Council.
  • http://www.breakingwindows.com Matt Paprocki

    How would a parent even know if their kid had xeroderma pigmentosum? Wouldn’t one exposure as an infant be disaster?