January 3 , 2005

ON MORGAN FRITZ, 2005 MDA NATIONAL GOODWILL AMBASSADOR

I can't think of a better way to start off the New Year than with the wonderful news that 6-year-old Morgan Fritz of St. Peters, Mo., has been named our 2005 MDA National Goodwill Ambassador.

Six-year-old Morgan Fritz, seen here with her parents, Sue and Ron, has been named MDA National Goodwill Ambassador for 2005.

In her new role, Morgan, along with her parents, Sue and Ron, will be making appearances in behalf of MDA throughout the year and will be featured on the 2005 Jerry Lewis MDA Labor Day Telethon.

This radiant youngster, who has a form of spinal muscular atrophy, has made memorable appearances on the 2003 and 2004 Telethons, and has done an outstanding job as MDA Goodwill Ambassador for the State of Missouri.

Morgan uses a special standing wheelchair for mobility and attends kindergarten. She has many interests, ranging from taking pictures and swimming to collecting purses, stickers and gems. She also loves angels, who she says sometimes play with her and sleep with her. And Morgan loves her cat, Licorice, too!

This past June, when celebrated teen poet Mattie Stepanek died in the midst of his third remarkable term as MDA National Goodwill Ambassador, MDA decided that, in Mattie’s honor, we wouldn’t name a successor until his term had ended. Mattie’s mom, MDA National Vice President Jeni Stepanek, graciously agreed to fulfill Mattie’s role in an honorary capacity until year’s end. (Jeni got to meet Morgan and her family behind the scenes at Telethon 2004.)

I want to take this opportunity to express the profound thanks of our Association to Jeni. She’s remained a mountain of strength for MDA throughout this very difficult year, and spoke with great eloquence on the 2004 Telethon about the grief of losing Mattie and the need to carry forward his wish to see all neuromuscular diseases defeated. We’re grateful that she continues to be an important part of MDA’s leadership.

	Last June, Morgan visited MDA summer camp in Chesterfield, Mo., with her dad, Ron (left), Parade magazine Editor and Senior Vice President Lee Kravitz, and a host of fire trucks. Morgan’s visit was featured on Telethon 2004 as part of a tribute to the International Association of Fire Fighters on the 50th anniversary of its commitment to helping “Jerry’s kids.”

Mattie, who loved fire fighters, would have been pleased to know that Morgan’s dad is a fire fighter and paramedic with International Association of Fire Fighters local 2665. As such, Ron has been involved in IAFF fund-raising activity in behalf of MDA for over two decades, long before Morgan’s SMA caused the family to turn to MDA for help. Ron’s a colleague and friend of one of Mattie’s most cherished friends, IAFF General President and MDA National Vice President Harold Schaitberger.

In 2003, MDA videotaped a profile of Morgan and her family, which aired on that year’s national Telethon broadcast and again in 2004, accompanied by live follow-up remarks from the Fritz family.

In addition, Morgan and Ron appeared in a special segment on Telethon 2004 saluting fire fighters, hosted by Parade magazine Editor and Senior Vice President Lee Kravitz, (The setting was an MDA summer camp. Morgan was there as a day visitor; in 2005, she’ll be old enough to attend as a camper for the whole week.)

Morgan, a stunningly beautiful child who’s captured the hearts of everyone who’s ever met her, is looking forward to traveling and making new friends for MDA during 2005.

Recently, the Fritz family visited our MDA national headquarters here in Tucson, for the purpose of being videotaped and photographed for a variety of MDA public information materials.

Morgan’s family – which includes older sister Madeline and younger brother Austin, both of whom are unaffected by SMA -- epitomizes the hopes and struggles of all families whose lives have been impacted by the neuromuscular diseases in MDA’s program.

In an emotional moment from our 2004 Telethon, MDA Board Member and Telethon Co-Host Jann Carl clasped Morgan’s hand and said: “See this hand? This hand is never letting go. And neither is anybody else at MDA.”

Amen to that. MDA will continue to press forward with research seeking treatments and cures while providing medical services at MDA-sponsored clinics nationwide… all in furtherance of our mission to make life better for families fighting neuromuscular diseases.

And with the wonderful Morgan Fritz on our team, I have a feeling we’ll be gaining many, many new friends to help us in this all-important quest.

With every best wish...

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