May 4, 2006

ON THE FLOURISHING LEGACY OF MATTHEW JOSEPH THADDEUS STEPANEK

Nearly two years have passed since we suffered the terrible blow of losing best-selling poet and MDA National Goodwill Ambassador Mattie Stepanek. On June 22, 2004, weeks before his 14th birthday, Mattie died of the mitochondrial myopathy which had previously taken the lives of his three siblings.

Mattie, who served three remarkable terms as MDA National Goodwill Ambassador, published five best-selling “Heartsongs” volumes of poetry prior to his death. The sixth book, “Reflections of a Peacemaker: A Portrait Through Heartsongs,” was released posthumously in August 2005.

	Proceeds from Mattie Stepanek's newly published collaboration with former President Carter, "Just Peace: A Message of Hope," support the MDA Mattie Fund.

On April 26, 2006, “Larry King Live” presented a fascinating hour devoted to Mattie’s memory featuring a joint appearance by Mattie’s mother, Jeni Stepanek, and Mattie’s friend and mentor, former President Jimmy Carter. Both Larry King and Jeni Stepanek serve as MDA National Vice Presidents. Jeni is affected by an adult-onset form of the disease that affected her children; she didn’t receive her diagnosis until after the birth of her last child, Mattie.

Renowned poet Maya Angelou also appeared on the program, calling Mattie a “peace bringer.” When asked to evaluate Mattie’s poetic gifts, she replied: “That's a little, Larry, like saying how free is this air you're breathing or how wet is water? He was a poet, and a fine poet. I think the poet really -- beyond his or her ear for the language -- agrees to take responsibility for the time he takes up and the space she occupies. And that was Mattie.”

President Carter offered his own impressions to King and his audience: “I think the impact of Mattie's life that resonates in me and in Maya Angelou and in you, who met him, will last for a lifetime. So I would say tens of millions of people were benefited and touched in a beneficial way by Mattie Stepanek. And he also was a leader in the MDA, as you know, and helped raise funds for that.”

	MDA National Vice President Jeni Stepanek is currently on a national book tour to promote her son’s last book, “Just Peace: A Message of Hope.”

During the hour, Jeni informed viewers of the many ways that Mattie’s legacy of hope and peace is being carried forward in 2006.

Notably, March saw the publication of Mattie last’s book, a collaboration with Carter titled “Just Peace: A Message of Hope.”

In addition to essays and photos, the volume contains correspondence between Mattie and the former president on a number of topics, usually centered on the subject of attaining peace both personally and on a societal/political level.

Carter provides a foreword for the book, and Jeni Stepanek wrote the preface and served as editor.

“The purpose of this book is to offer insights on why conflict and violence exist in a world filled with people who are generally and genuinely good,” writes Jeni in the preface. “Most of all, Mattie wanted to share his thoughts on the ‘profound simplicity of choosing and planning peace.’”

At age 11, Mattie wrote: “I do believe in peace and hope and forgiving. But once in a while, I feel very stressed inside and almost torn up. Then I feel guilty for not feeling peaceful inside, when I tell people how important it is. Am I still a peacemaker? Can I learn to be peaceful all the time?”

A portion of the proceeds from the book will benefit the MDA Mattie Fund, which was established by MDA after Mattie’s death to foster research into childhood neuromuscular diseases.

	At the groundbreaking ceremony for the Mattie Park in Rockville, Md., Jeni Stepanek and service dog Micah were joined by Andy Gordon, president of King Farm Citizens Assembly; Burt Hall, director of Rockville Recreation and Parks Department; and Bob Balkam, a neighbor and family friend.

In addition, last year MDA created the MDA Mattie Stepanek Fellowship Award, with the first award going to Stefanie Zanssen, a physician-scientist in the Department of Neurology at Columbia University in New York.

Another development Jeni spoke about on “Larry King Live” was the creation of a public park in Mattie’s honor, the Mattie J.T. Stepanek Park at King Farm in Mattie’s hometown of Rockville, Md.

“The park is 26 acres of land right in our neighborhood,” said Jeni.

The park will be completed in 2007, although parts will be open this coming August. The fully-accessible park will include ball fields, a playground, concession stand, a dog park, plenty of green space and paths, and a statue of Mattie in his wheelchair with his service dog, Micah, beside him sitting at a chess table by a plaque reading: “Peace is possible. It can begin simply over a cup of tea and a game of chess.”

“And people will be welcome to come and play after whatever storm is in their life,” Jeni said, making reference to one of Mattie’s favorite expressions: “Remember to play after every storm.”

	The Peacemaker Bike, featuring design elements that recall Mattie Stepanek’s life and art, is traveling the country to raise awareness of neuromuscular diseases. Seen here with the bike are Lynn Jones, owner of Lynnco Custom Cycles, Jeni Stepanek and Micah.

Jeni is enthusiastic about yet another inspirational effort, a custom-designed motorcycle called the Peacemaker Bike which is the brainchild of entrepreneur and philanthropist Lynn Jones. Jones is the owner of Lynnco Custom Cycles, based in Cleveland, Tenn.

After hearing Mattie’s story from members of the International Association of Fire Fighters (IAFF), a longtime MDA national sponsor, Jones wanted to find a way to honor the fallen poet.

The result was the Peacemaker Bike, a joyous celebration of Mattie’s remarkable spirit which is distinguished by design elements recalling Mattie’s life and art. After traveling the country to raise awareness of MDA’s fight against neuromuscular diseases, the Peacemaker Bike will be auctioned off in support of the MDA Mattie Fund.

“Even though I never met Mattie, I felt compelled to do something to support the great cause he represented, MDA,” said Jones.

Lynn Jones is not alone in continuing to be moved by Mattie’s story even though Mattie himself is gone. Recently MDA received a donation to the Mattie Fund, followed by this touching letter from the donor:

Dear MDA Staff:

Today I received a card from you stating that you acknowledged my recent modest gift to the MDA in memory of Mattie Stepanek, and that the notification of my gift had been sent to Mattie’s mother, Jennifer Stepanek.

The notification gave me the idea of asking if you could send to her this letter telling her how much her son has meant to me. I am a 65-year-old retired psychiatric social worker and former Lutheran pastor who now volunteers in several religious and secular agencies and has been a writer of poetry for more than 30 years. Mattie’s unique work fascinates and challenges me both poetically and theologically. I have all his books and appreciate each one in its own way, but am especially moved by “Reflections of a Peacemaker: A Portrait Through Heartsongs” and “Just Peace: A Message of Hope."

Since I cannot thank Mattie directly in this life, I would like to express that thanks to Jeni, and also to say how much I admire her dedication to helping Mattie be all he could be. The photo in “Just Peace” of her and Micah (Mattie’s service dog) visiting the graves of her four children was overwhelming to me, and helps drive home the incredible pain she has had to endure.

All I can think of to say right now is to extend to her my heartfelt prayers, and to hope the knowledge of the good Mattie has done and continues to do is a comfort to her.

Mattie makes me ashamed of any tendency in me toward self-pity and challenges me to make the best use possible of my remaining years.

How extraordinarily much he accomplished in almost 14 years!

Shalom,
Henry Dorsch,
Hyde Park, Mass.

All of us at MDA are grateful to caring individuals like Henry Dorsch who continue to contribute to the Mattie Fund.

To lend your support to the Mattie Fund, click here.

MDA will strive to live up to the memory of Mattie Stepanek, and we can look no further than Jeni herself to see a shining example of how to carry forward his legacy.

“She has duties on her shoulders of her own and she's inherited a great responsibility,” said President Carter of Jeni near the end of the Larry King broadcast. “Mattie left very detailed instructions for me and for Jeni and for others on how to carry on his legacy. So, we have our hands full with our own duties and also with those that Mattie gave to us.”

Perhaps Larry King himself summed it up best at the end of the broadcast when he said: “You don't go very long without thinking about Mattie Stepanek and the lives he touched. I can speak for everyone with us tonight. We will never, never forget him.”

With every best wish . . .

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