Brick by Brick Newsletter
Building Awareness Brick by Brick

November 2006
Where Advocacy and Awareness Continue
http://march-of-faces.org/
Topics; Stem Cell
Vote
Kyle Hahn
So Much / Fast
Tomato Juice
Bannner
My Life



HUMAN STEM CELLS DELAY START OF LOU GEHRIG’S DISEASE IN RATS

Researchers at Johns Hopkins have shown that transplanting human stem cells into spinal cords of rats bred to duplicate Lou Gehrig’s disease delays the start of nerve cell damage typical of the disease and slightly prolongs life. The grafted stem cells develop into nerve cells that make substantial connections with existing nerves and do not themselves succumb to Lou Gehrig’s, also known as amyotrophic lateral sclerosis (ALS). The study is published in this week’s issue of Transplantation.

“We were extremely surprised to see that the grafted stem cells were not negatively affected by the degenerating cells around them, as many feared introducing healthy cells into a diseased environment would only kill them,” says Vassilis Koliatsos, M.D., an associate professor of pathology and neuroscience at Hopkins.
Although all the rats eventually died of ALS, Koliatsos believes his experiments offer “proof of principle” for stem cell grafts and that a more complete transplant of cells - already being planned -- along the full length of the spine to affect upper body nerves and muscles as well might lead to longer survival in the same rats.
“We only injected cells in the lower spine, affecting only the nerves and muscles below the waist,” he noted. “The nerves and muscles above the waist, especially those in the chest responsible for breathing, were not helped by these transplanted stem cells.”
The research team used so-called SOD-1 rats, animals engineered to carry a mutated human gene for an inherited form of ALS. As in human ALS, the rats experience slow nerve cell death where all the muscles in the body eventually become paralyzed. The particular SOD-1 rats in the study developed an “especially aggressive” form of the disease.

John Hopkins Medicine



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Mid Term Elections November 7 ‡ Be a Silent Warrior for ALS

The ALS community is very close to having the ALS Registry Act become new legislation. The bill is more important to ALS than you think. More than ever we need medical change because today we have way too many people hurting. The only way to make change is to go to the Polls and Vote. Today we can keep an eye on those that we send to Washington to work for us. I assure you that people with ALS can make a difference and never before has it become so easy. At the polls Election Officials are being trained to assist the disabled while voting. It doesn't matter what party you favor, look at the issues that make change. When ALS attacks it doesn't care about age, race, policy or government. Be a Silent Warrior, go vote, be seen, be heard and most of all let Congress know you are watching them more now than ever. There is no other organization that has a better handle on politics than the ALS Association. They have tools on their web site that can turn any of us into real ALS Lobbyist. If you are battleing ALS you and your family can be Silent Warriors. If your ready to fight the ALSA War Chest is loaded with weapons, go take a look.

Oct. 30, 2006 ALS Registry Act Senate & House Totals

S. 1353 Co-Sponsors 49 (19 R, 30 D) H.R. 4033 Co-Sponsors 209 (74R, 1 I, 134D)

Check Marks takes you to ALSA Public Policy Page
Pals Leon Peek

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On a Cold November Day, Kyle Hahn Signs In, Gets His Ballot and Votes 1,2,3



"We must vote for hope, vote for life, vote for a brighter future for all of our loved ones".

Ed Markey



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So Much / So Fast (2006) An ALS Documentary

In the medical community, ALS (Amyotrophic Lateral Sclerosis) has long been referred to as an "orphan disease," due to the relatively limited public and private funding for research into this progressive neuromuscular illness that claimed the life of baseball great Lou Gehrig. But when Jamie Heywood's good-natured, low-key younger brother Stephen is stricken with ALS at age 29, Jamie, a MIT-educated mechanical engineer, decides to buck the medical research system and jump-start the research for a cure by establishing the ALS Therapy Development Foundation. Driven, charismatic, and aggressive, Jamie channels all his considerable energy and ambition into funding alternative and radical drug therapies that might help Stephen, who bravely tries to maintain a semblance of normalcy in his life by getting married and fathering a little boy. Although ALS eventually forces Stephen into a mechanized wheelchair and robs him of the power of speech, he faces the inevitable without a shred of self-pity. Meanwhile, Jamie keeps pushing scientists and ALS researchers to find a cure, even as he's dealt his own share of family strife.
So Much So Fast was a highly personal project for the filmmakers; Jordan's mother, seen in Troublesome Creek, died from ALS. They first learned of the Heywoods' incredible story by reading Jonathan Weiner's 2000 New Yorker profile of the brothers. Granted virtually unlimited access to record the daily struggles and triumphs of both Jamie and Stephen, the filmmakers capture the emotional and physical impact of ALS on the entire Heywood family with unflinching intimacy. If So Much So Fast is sometimes a little too sketchily rendered—for instance, it's never entirely clear just how Jamie sets up his "guerrilla-science research" foundation—this Sundance Grand Jury Prize/Audience Award-winning documentary is nonetheless a deeply moving and uplifting portrait of uncommon grace and valor.
So Much So Fast Reel.Com Review
A humbling and inspiring chronicle of one man's tireless efforts to save the life of his terminally ill younger brother, So Much So Fast is a powerful testament to the resiliency and courage of two extraordinary men. Five years in the making, this absorbing documentary from Oscar-nominated filmmakers Steven Ascher and Jeanne Jordan (Troublesome Creek: A Midwestern) immerses you in the lives of brothers Jamie and Stephen Heywood, temperamental opposites bound by a fierce love and a refusal to concede defeat when Stephen is diagnosed with ALS. How they and the rest of the Heywood family weather this crisis is treated with the utmost candor, sensitivity, and wry good humor in So Much So Fast.

So Much So Fast is not yet in distribution. For updates on where it will be shown, visit www.somuchsofast.com



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Tomato Juice May be Good for You

What do you do when the person who raised and cared for you becomes ill herself? For author Diane Hamilton, that moment happens when her beloved mother becomes critically ill with A.L.S. Progressive Bulbar Palsy or, as some refer to it Lou Gehrig Disease. Hamilton leaves her job and becomes her mother’s primary caregiver. But caring for an A.L.S. patient isn’t easy. There are no books to help her, and so she and her mother begin their journey together, with trial and error efforts and the support of a loving family. In a moving month-by-month tribute, Hamilton invites you into her life as a caregiver, showing you how illness brings her and her mother even closer together, and that even in the midst of sorrow, love survives. As her mother gets more and more ill, losing her ability to swallow and to talk, Hamilton and her family cope. She discovers the wonders of sippy cups and how tomato juice is the one thing her mother can drink. Life and celebrations still go on, and Hamilton’s daughter gives birth. Hamilton learns to do things her mother’s way, and gives helpful tips on coping and nutrition and how love and laughter are always the best medicine. This is a moving and important book, and an essential read for anyone who is a caregiver or a patient-or who might be in the future.


The book is available at: www.Amazon.com / www.Borders.com



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Where in the World is the Banner?

This month ALS March of Faces would like to pay tribute to our friends in Canada for including the Faces of Courage in a number of their events. We also would like to thank our very own Vice President, George Goodwin for his never ending efforts to bring real awareness to so many people. For the Fall Season in Canada the Banner has played an important role in generating awareness and funds needed to help those affected by ALS. The Banner is an endless March of Faces that connects us to the real issues of ALS. These Faces deliver a silent but strong message that speaks out and reminds us all that this illness is just one Face away. Each Face conveys it's own unique story that the public needs to hear. Let the Banner work for you and your ALS Awarness program. Call us today to get one started for your community.

ALS March of Faces


4594 Ashton Court
Naples, FL. 34112-8822
(877) 884-4798



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Keyboards of Kourage ALS Awareness Web Site

Say Hello to Mike & Jen Bougher

Just when you think you know all about life and living with ALS we are taken back again by yet another PALS. That's what happened to me when I came across "My Blissful Life with ALS". His name is Mike Bougher, a world travler, artist and through ALS he has developed this colorful eyeshot on life. We know that behind every good man stands a woman. Mike's wife Jen can always be found close at his side no matter what the occasion. His writings are real food for thought considering they are writen by a man who can not swallow. Here is a sampling of his view from the river of life. "

The human experience is similar to river rafting. You can use your paddles and try to avoid the big objects, but don't fool yourself, the river is in control. You can't go backwards, or change its course. You must take what the river gives you and do your best to handle it gracefully, all the while, enjoying the ride".

If that caught your eye wait until you see his digital paintings he creates using head movement and a computer. Mike claims to be virtually paralyzed, I don't think so, you be the judge.

My Blissful Life with ALS
PALS Leon Peek




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"We will not be hidden and left to die ever again!

Get used to it.... " Kyle Hahn Aug. 7,1958 / Aug. 9,2003

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Questions or comments?
E-mail Leon Peek

4594 Ashton Court
Naples, FL. 34112-8822
(877) 884-4798
a 501(c)(3) non-profit organization




http://march-of-faces.org/