Abbie Marsh Fund - Bedford Community Foundation

The Seventh Annual “ Abbie’s Fund” Scrambles Golf Outing “The Abbie Marsh Memorial Fund” is dedicated to the research and awareness of Leukodystrophy, a rare progressive neurological disorder known to mainly affect children. Saturday, August 7, 2010 8:00am at WHITEFORD Golf Club 2162 W. Alexis Road, Toledo, Ohio $75 / person $40 for Dinner only * * * Betting Holes * * * Games * * * Trophies * * * All golfers and dinner guests get: Dinner / Round of Golf with Cart / Door Prize / and a Sleeve of balls -- BUT -- REGISTER by JULY 24TH and ALSO get: Extra Free Round of Golf and a Tee Shirt (let us know size)

Downloadable Registration Forms		To Reserve Your Place Call: (734) 854-7697 or (419) 472-6684 or register online at: Lmarsh@btm-line.com
Sponsorship Packages Sponsorship form Team sign-up form
		Make Checks Payable to: The Bedford Foundation (Put Abbie’s Research Fund in the memo area) All Major Credit Cards are now accepted! Mail Checks to: Les Marsh @ The Bottom Line 3419 Sterns Road Lambertville, MI 48144

Mission Statement
I. Abbie’s Fund is a permanent endowment fund that is dedicated to aiding the research for treatments of Leukodystrophy (and in particular, the form of Leukodystrophy known as CACH disease) and of other orphan diseases, and to promoting public awareness of Leukodystrophy.
II. Abbie’s fund will also help to support families of children with terminal diseases.

Beneficiary’s of the fund will include, but are not limited to:

The United Leukodystrophy Foundation (ulf.org)
The Children’s Inn at NIH
Make a Wish / Give Kids the World and those individuals and organizations that support the fund’s mission

What is Leukodystrophy?
The leukodystrophies are genetically determined progressive disorders that affect the brain, spinal cord and peripheral nerves. The term leukodystrophy derives from the Greek words "leuko" meaning white and referring to the white matter of the nervous system and "dystrophy" meaning imperfect growth or development.
White matter is white to the naked eye because it contains a complex chemical substance called the myelin sheath. Myelin contains a variety of fatty substances or lipids. Its function is to insulate the axon through which nerve impulses are conducted, much as does insulation around an electric wire; the axon being the biological equivalent of the wire. The myelin sheath is a very complex substance. It is made up of at least ten, and probably more distinct chemicals. Each of the leukodystrophies affects one (and only one) of these substances that all affect the myelin sheath in some way, but otherwise, they are totally separate.
When the term dystrophy is used in medicine, it is meant to imply a condition that is genetically determined, and which is progressive; that is, the condition tends to get worse as the patient gets older. Muscular Dystrophy is another example of this type of illness. Sharply to be distinguished from the leukodystrophies are disorders due to inflammation, infections, or tumors. In respect to white matter diseases, an important distinction must be made from Multiple Sclerosis. Multiple Sclerosis also affects the white matter of the nervous system, but it shows inflammation, it is not genetically determined, and it characteristically shows an "up and down" course, rather than slow progression.
Another difference between Leukodystrophy and Multiple Sclerosis is that while Multiple Sclerosis usually strikes adults between the ages of 20 and 50, those with Leukodystrophy rarely see the age of 20.
How to Help!
Because of our affiliation to the “Bedford Foundation”, contributions to Abbie’s Fund are now fully deductible for income tax purposes to the extent allowed by law. If you are interested in donating to our cause, please make your check payable to “The Bedford Foundation”) but put “Abbie’s Fund” in the memo area.
Please email or call with any questions – We would love to hear from you!