A FUNdraiser for a member of our AAAA family
We are hosting a fundraiser to suppor Matt - one of our STARS swimmers. Matt Reimer, a second-grader at Deerfield Elementary school, has been diagnosed with X-Linked Childhood
Adrenoleukodystrophy (X-ALD).
The leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient.
Childhood cerebral ALD is one of the most common forms of X-linked ALD, comprising approximately 30% of all patients with X-ALD. Onset of childhood cerebral ALD occurs between the ages of 2 and 10. Up to the point of onset, development is normal. The most common initial symptoms are difficulty in school, behavioral disturbance, impaired vision, or impaired hearing. After initial neurological symptoms appear, the health of the patients deteriorates rapidly. Further symptoms may include dementia, poor coordination, seizures, hyperactivity, difficulty with speech, and headaches. The average time between the initial symptoms and a vegetative state (where the patient is bedridden) or death is approximately 2 years, although it can range anywhere from 6 months to 20 years.
Because Matt’s condition was diagnosed in the early stages, he is only showing symptoms of adrenal insufficiency. He is not showing cerebral signs yet. Matt has been accepted by the Kennedy Krieger Institute in Baltimore, Maryland to participate in the Lorenzo’s Oil Medical study to attempt prevention of cerebral onset.
The AAAA fundraiser is to help with the travel expenses for the Reimer family to go to Baltimore in July. A number of activities have been planned, including:
Orange Leaf
Tuesday, May 10th; 6:00-10:00pm
20% of proceeds will go to Matt’s fund
A Bowling Fundraiser at Royal Crest Lanes
Sunday, May 15th; 2:00-4:00pm
One game and shoes = $10
50% of proceeds will go to Matt’s fund
Donated items will be auctioned at the event - If anyone know of a restaurant or company who would be willing to donate gift cards, please contact Tracy Ford Stacey
Wayne and Larry’s
By participating in the Bowling Fundraiser, you will receive a coupon inviting you to eat at Wayne and Larry’s from Monday, May 16th to Sunday, May 22nd.
Wayne and Larry’s will donate 10% of your total bill to Matt’s fund.
More information about Leukodystrophies and X-ALD can be found at www.ulf.com.
The leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient.
Childhood cerebral ALD is one of the most common forms of X-linked ALD, comprising approximately 30% of all patients with X-ALD. Onset of childhood cerebral ALD occurs between the ages of 2 and 10. Up to the point of onset, development is normal. The most common initial symptoms are difficulty in school, behavioral disturbance, impaired vision, or impaired hearing. After initial neurological symptoms appear, the health of the patients deteriorates rapidly. Further symptoms may include dementia, poor coordination, seizures, hyperactivity, difficulty with speech, and headaches. The average time between the initial symptoms and a vegetative state (where the patient is bedridden) or death is approximately 2 years, although it can range anywhere from 6 months to 20 years.
Because Matt’s condition was diagnosed in the early stages, he is only showing symptoms of adrenal insufficiency. He is not showing cerebral signs yet. Matt has been accepted by the Kennedy Krieger Institute in Baltimore, Maryland to participate in the Lorenzo’s Oil Medical study to attempt prevention of cerebral onset.
The AAAA fundraiser is to help with the travel expenses for the Reimer family to go to Baltimore in July. A number of activities have been planned, including:
Orange Leaf
Tuesday, May 10th; 6:00-10:00pm
20% of proceeds will go to Matt’s fund
A Bowling Fundraiser at Royal Crest Lanes
Sunday, May 15th; 2:00-4:00pm
One game and shoes = $10
50% of proceeds will go to Matt’s fund
Donated items will be auctioned at the event - If anyone know of a restaurant or company who would be willing to donate gift cards, please contact Tracy Ford Stacey
Wayne and Larry’s
By participating in the Bowling Fundraiser, you will receive a coupon inviting you to eat at Wayne and Larry’s from Monday, May 16th to Sunday, May 22nd.
Wayne and Larry’s will donate 10% of your total bill to Matt’s fund.
More information about Leukodystrophies and X-ALD can be found at www.ulf.com.
