MarfanLife.net | News blog

Welcome To The Tony B Fund
Tony has recently undergone emergencyheart surgery to replace his ascending aorta. He had been working in construction and was not offered health insurance, hence his extreme medical expenses are not covered. Therefore, he could use all the help he can get right now. Although Tony has not publicized his personal ordeal, we feel it’s important to make others aware of his situation.

[I found this website while surfing My Space. Thought people might want to check it out. -Jeanette]

Couple honored for work with Marfan foundation
Barbara and Steve Hawthorne, of Freehold, were honored by the National Marfan Foundation (NMF) with a Silver Service award for their contributions to the Marfan community. The Silver Service awards are part of the NMF’s 25th anniversary celebration. These recognitions for 18 NMF members were based on nomination by their peers for outstanding volunteer service.

Music for Marfan (8th paragraph)
Temescal Trio—Madeline Prager (viola), Karen Wells (clarinet), John Burke (piano)—will perform a benefit, Music For Marfan, Sun. Dec. 3, 3:15 p.m. at St. John’s Church, 2727 College Ave., with selections from Shostakovich, Brahms and Mozart, followed by a dessert buffet. Marfan is an inheritable condition that affects the connective tissue in one in five Americans. Admission for concert and buffet, $.

ETonline.com: Aretha Franklin Performs Benefit Concert
Only ET was invited backstage with ARETHA FRANKLIN during her special charity performance Tuesday night in New York.

The “Queen of Soul” broke the news that she’ll pay tribute to her friend and former CBS newsman ED BRADLEY at his memorial service next week.

“I’ll be singing,” she added. “I used to see him down in New Orleans all the time.”

Aretha was in New York to perform at the Hammerstein Ballroom in a benefit show for the National Marfan Foundation (www.marfan.org).

EURweb.com - Black Entertainment | Aretha Franklin in Concert
The National Marfan Foundation presents Aretha Franklin, a benefit concert from the heart of the Queen of Soul, on Tuesday, November 14, 8:00 pm, at the Hammerstein Ballroom (Manhattan Center Studios, 311 West 34th Street, between 8th and 9th Avenues).

WTOK | Make A Wish Come True
Colin Mochrie and Brad Sherwood were at the Riley Center Saturday doing what they do best… Improv comedy. With the help of The Make A Wish Foundation they helped to make a dream come true.

Andrew Conley attends Southeast Lauderdale where he is like any other kid his age. He knows everything there is to know about the Lord of the Rings and he loves to laugh. Andrew also has Marfan Syndrome, a connective tissue disorder. One of the symptoms of the disorder is scoliosis, or a curvature of the spine. Because of this, he had to have back surgery.

DesMoinesRegister.com
WEST DES MOINES - 7 p.m. Saturday: “Big Hearts, Deep Pockets.” “Comedy Co-Operative” will perform. Benefits Heart of Iowa Chapter of the National Marfan Foundation’s educational programs and conference scholarships. Billy Joe’s Pitcher Show, 1701 25th St., West Des Moines. $10 in advance, $12.50 at the door. . www.heartofiowa.org.

Waterford Today Pony and trap ride raises over €7,000
A team of Ponies and Traps, led by local farrier Billy Meany, on a drive from Kilmacow to Tramore on Saturday last, managed to raise over e7,000 for research into a rare connective tissue disorder called Marfan Syndrome.

Shooting at clay pigeons for Marfan charity
On Saturday, chairman Alan Skepperd up his farm in Harthill for people to come and have a go at the sport, and despite foul weather, it raised £1,000.
Novices and professionals alike braved the mud to go along and try their hand at shooting, helped along by professionals brought in to make sure the day ran smoothly.

Steve Marpman and the Kiefers, and the silent auction table