Fundraisier awareness for CMT

[Guest guest]

Dear Friends, you're invited:

 

Mrs. New York America will be co-hosting the Mark Farruggia 11th Annual Golden

Benefit Charity Golf Classic and Pride of New York wine & Cheese Tasting Event

and Dinner on July 19, 2008 for Hunter's Hope Foundation and Neuromuscular

Disease Center at the University of Rochester Medical Center at Conesus Golf

Course, Rt. 15, 1 Pine Alley, Conesus, New York.

 

18 holes golf/w cart includes lunch and dinner $85 pp, Prime Rib Buffet $30pp. ,

hole sponsorship $100 , Business card size name in our booklet $25.

 

I started the Golden Benefit Charity Golf Classic because I had my life altered

by CMT.

 

Hunter's Hope Foundation was established in 1997 by Pro Football Hall of Fame

member and former Buffalo Bills Quarterback, Jim , and his wife, Jill,

after their infant son, Hunter, was diagnosed with Krabbe Leukodystrophy, an

inherited, fatal, nervous system disease. The Foundation is the 's life

long commitment to increase public awareness of leukodystrophies as well as to

increase the likelihood of early detection and treatment. Their ultimate goal is

to raise money to fund research efforts to identify new treatments, therapies,

and a cure for Krabbe and other leukodystrophies.

 

The Neuromuscular Disease Center at the University of Rochester Medical Center

offers state-of-the-art comprehensive care to over 4,500 patients affected by

neuropathy, ALS, muscular dystrophy, myasthenia gravis, and other neuromuscular

disorders.  The Center strives to provide patients and their families with the

tools, resources, and emotional support they need to understand and meet the

challenges of their diseases so they can live their lives to the fullest. 

Physicians and scientists at the Center are actively involved in research to

uncover the mysteries of these neuromuscular disorders and to develop new

treatments. 

 

If you have any question please don't hesitate to call me at 585-519-1917 or

email me at goldenbenefit@...

 

Sincerely,

 

Mark Farruggia                                                    

[Guest guest]

Mark,

I am sorry that I haven't been in closer contact with you regarding the

fundraiser; however, June was the busiest month in a long time for me.

Today I have three appointments, and the Planning Board meeting this

evening. I am now chair of the P. Board which occasions some more time spent

on its

issues.

However, I am uncertain about a family foursome this year, as one son is

moving, another is involved with Little League playoffs, and can't commit at

this time, and Joe isn't doing all that well.

May I ask why you are targeting the Neuromuscular Center in particular, and

not CMT itself? Your tournament is a great way to increase awareness of the

problem, and we certainly do need to make people and physicians in general aware

of our situation. My balance is becoming worse,as is Joe's, so my own

situation may change soon.

Does your celebrity person have a personal connection with CMT? Are you

getting materials from Mrs. Quellette, posters, medical alert cards, etc.? How

is your own group going?

P.