Wednesday, January 6, 2010

First Charity of 2010: Hopes and Dreams Quilt Challenge for ALS

You probably know of my interest in finding a cure for ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig's Disease. My husband and many members of his family are victims of this neuromuscular disease. We are not alone in this struggle that always, ALWAYS, ends in death. There is no treatment. There is no cure.



Kathy Thompson, CEO of Quilters Dream Batting Company, is fighting for a cure for her son who was striken shortly after the birth of his own son. Kathy has connections, a network, and money. Her project is making a difference. But even with all the tools she has in her arsenal, she cannot succeed alone. So I hope you will all consider getting involved with this project.

I think many of you have voiced how much you like the batting, well, now's a chance to use it (or any batting of your choice) to make a quilt to raise funds for ALS research or provide comfort for an ALS patient.

Barbara Bierangel from Kailua Kona, Hawaii donated this intricate quilt in memory of her father, Henry Luhning of Minnesota, who passed away from ALS. She writes that "it was a learning experience for the family to see this man who was always so able bodied lose his ability. His love of fishing was kept alive because a couple of younger men would take him out fishing even though they had to carry him into the boat." Barbara sends her warmest hugs along with this wonderful quilt.

Here's how Kathy describes the project:

Please give the gift of a quilt to warm the life, the heart and the lap of an ALS patient, and help raise awareness and research money for ALS – Lou Gehrig’s disease. To be a part of the Hopes and Dreams Quilt Challenge - Simply fill out your entry form and donate your quilts today.

Your donated quilts will be given to an ALS patient or used to raise awareness and research money for ALS by being photographed, displayed, auctioned, or raffled.

In addition to contributing your quilt to a wonderful cause - ALL donated quilts are eligible to win exciting and wonderful prizes. Our list of generous sponsors, categories and great prizes is growing!

Hopes and Dreams is a non-juried quilt challenge. All donated quilts will be entered into general prize drawings plus there are incredible prizes recognizing the most generous quilter, quilt shop, professional quilter and guild. Special prize categories for theme quilts and 'most popular' quilts.

For the comfort of the patient, we request that quilted or tied quilts be a minimum of 35" x 44". Lap and Bed size quilts of all sizes are welcomed. We look forward to you joining us in this unique quilting event - the Hopes and Dreams Quilt Challenge for ALS.
Kathy also writes a letter describing her personal affiliation with ALS:

Two years ago, at the age of 32, my wonderful son, Josh, was diagnosed with ALS (Lou Gehrig’s disease). In two years, the disease has taken Josh from a strong, happy, athletic young husband and new father to being completely paralyzed – unable to eat, speak, or move. He is on life support. To say his diagnosis and this experience have been devastating is a true understatement. It was shocking to learn that a disease that was discovered well over 100 years ago has absolutely no treatment or help available. Scientists still do not know the cause and do not understand the cascade of damage.

At first we thought ALS was rare, but it is the most common neurological disorder. Every 90 minutes an America is diagnosed with ALS, and every 90 minutes an American dies of ALS. Complete paralysis (referred to as a “Glass Coffin”) and death are so rapid that the there is very little interest in research for ALS – as it is not deemed profitable. Most ALS patients become paralyzed and die within 6 months to 5 years of being diagnosed. For an unknown reason, more and more young people are getting ALS. The US military has also been particularly hard hit and ALS is now considered part of the Gulf War Syndrome. Today there is an estimate 35,000 to 50,000+ Americans living and dying from ALS.

Still reeling from the shock and desperation of my son’s diagnosis and the terrible losses and heartbreak that he has experienced, our family decided that the best way we can honor Josh and other devastated families is to help raise awareness, help raise money for research, and reach out to help underserved ALS patients.

Sponsoring a quilt donation program and quilt contest is something I feel very strongly about. When I contacted the Virginia director of the ALS Association, she was thrilled (coincidentally she is an avid quilter!) We are hopeful that the “Hopes and Dreams Quilt Challenge” will soon be an important annual event in an effort to help raise awareness, warm the hearts and laps of suffering and forgotten ALS patients, and raise research money along the way.


Kathy Thompson (Josh’s Mom)

(The pink and diamond quilt shown above was made by Nancy Hinds. The first quilt shown here was donated from Terry Albers of Hedgehog Quilts, Greenbay, WI. Hedgehog Quilts also sent patterns of this quilt for a lucky prize winner.)

For more about Josh and their fight for a cure, there is a New York Times article that fills in alot of the information. Also, Kathy has also successfully raised $$$ for ALS research through the annual Walk to Defeat ALS. She's a natural at this fundraising business, but she can't do it alone.


SewLindAnn said...

I just read thoroughly your blog and the NY Times article on the ALS struggle of Joshua. I am utterly speechless and filled with emotion. I am not as talented or experienced as the donations you posted show people to be, but will do my best to make something nice. Thank you for bringing this to my attention.

Dawn said...

It is hard to read any of the personal stories of ALS victims without feeling the emotion. The disease usually makes them stumble and within a year this athletic person is in a wheelchair. Within two to three years they have a feeding tube and by four to six years they are dead. Most families can't even get the equipment they need fast enough to meet the needs! Mariam of the twinkling eyes was a school teacher, lost her voice, her ability to control the saliva or swallow properly and her loving husband could only look on helplessly as she deteriorated. Less than four years and she went from a full time teacher to another statistic in the ALS victims list. I do so miss Mariam.

I'm so glad you're contributing a quilt. If you look at the bottom right corner of my blog, at the little cat fan quilt, you will see that I don't possess talent or experience, but I'm making a quilt, too. :) Don't feel like Kathy only wants award winning quilts -- in fact Nancy Hind's quilt was a UFO that she was dissatisfied with. She tore it apart and redid it in the diamond design. So I guess you could say it started out as a mistake and has ended up as a most treasured gift! Whatever you contribute will also become a treasure to someone who is loosing everything.

Thanks so much for your quilt.