Welcome to Fasttrackpgh.com,
Hi Morgan McLane here again and this is year number two for Barbra Lee’s Fast Track to a Cure, last year we raised $3,500 dollars for the HDSA (Huntington's Disease Society of America). Last years my family and I put the event in motion along with help from the NHSCC.
Take a look around the website, and if you have any questions feel free to email me, I will get back to you as soon as I can with the best answer for your question.
My name is Morgan McLane and I am sponsoring this Autocross for my aunt, Barbara Lee Scott, who was diagnosed with Huntington’s Disease in December, 1999. I have followed her struggle with this disease with a great deal of interest and sadness.
Let me tell you a little about her, she was born May 20, 1943 a healthy, happy baby. She won many “Beautiful Baby” awards. She started her working career as a secretary. Aunt Barbara married Dan Scott and had 2 daughters named Heidi and Jessica. Her daughters, my cousins, each have two children. Heidi has 2 daughters, Gianna and Cara, and Jessica has 2 sons, Ronnie and Gage. Her life was turning out to be just as she dreamed. In her 40’s her personality changed and her life changed. Looking back, this was when we realized that this was the beginning of her Huntington’s Disease. She lost her job, then the ability to drive, then finally the ability to live alone. In 2005, she was placed in a nursing home. She is now confined to a wheelchair, has difficulty in speaking, swallowing and has involuntary movements (chorea). In 2008 she was moved to Woodhaven Care Center in Monroeville, so she can be closer to her family.
As her family, we do not know what she remembers or retains, but what we do know is she loves chocolate and having her family near, especially her 4 grandchildren. We’ve gotten a quick education on the disease. We know we have a long road ahead. I am hoping to make a difference in the public awareness of Huntington’s with the proceeds of this event going to the Huntington’s Disease Society.
"A devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically."
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or Muscular Dystrophy.
Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 45, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood.
HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.
Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington's Disease and its effects upon different individuals. By continuing to increase investment in both clinical and basic HD research each year, breakthroughs in treatment - and a cure can be forthcoming.
Have any questions or comments? Maybe you would like to become a sponsor of Fast Track to a Cure? If so, fill out the form below and we will be with you as soon as possible. Thanks!