Thank You

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Message From Aimee and Jim

January 30, 2007

We are overwhelmed and deeply moved at the staggering response to Martha Irvine’s AP article about our family. We owe an enormous debt of gratitude to Martha for the skill, sensitivity and compassion with which she captured our family’s story and to photographer Mike Green for his candid and poignant glimpses into our family’s life.

Thank You
Thank you so much for the prayers, kind thoughts, words of encouragement, personal experiences of illness and loss, wonderful suggestions for making memories, and offers of help that have poured in from all over the world. From France to Bangladesh, Malaysia to Germany, Australia to Venezuela, we are reminded just how small our world has become with the power of the internet. 

Even more, we are heartened, and we hope everyone visiting has been equally moved, by the outpouring of love on display in my guestbook. Often news headlines are littered with hatred and violence, and it’s easy to lose sight of the good in the world. Your thoughts and prayers have demonstrated what so frequently goes untold: the story of people lifting one another up and offering hope and solace to a family in need. 

Many readers have expressed concern that this story and my website neglect to mention any spiritual beliefs. While our faith has been tested by our experience with ALS, it has provided great comfort and strength through our journey. Again, we are so grateful for your many prayers on our behalf, and we are deeply moved by your expressions of friendship and love from all faith communities. 

Ways to Help
For those who have asked what they can do to help, we offer several options: 

Contribute to research: Sadly, progress on the ALS research front is hampered by the fact ALS is one of the most under-funded diseases—despite being one of the deadliest.  If you can make a donation to the Les Turner ALS Foundation, please do so and encourage others to do the same. 

Spread the word: One of the reasons ALS is under-funded is lack of awareness. With a roughly equal number of new ALS diagnoses and ALS deaths each year, the total number of ALS patients at any given time remains pretty static. Translation: We just die too damn fast to make a difference! If the AP article or this website struck a chord with you, please forward them to your family, friends, and coworkers.

Get involved: In the Chicago metropolitan area there are many opportunities to volunteer for Les Turner ALS Foundation events throughout the year. Help with Tag Days, work or walk with a team at the 2007 Walk4Life on September 8, or sign up for one of the many other events throughout the year. Outside the Chicago area, please contact your local ALSA or MDA chapter to find out where you can make a difference by helping out with events in your area.

Activism made easy:
Sometimes the words “advocate” and “activism” scare people off, but we urge you to look past those words. We are not asking you to participate in the most strident images of activism you see in the news but rather to spend a few minutes at your computer letting your members of Congress know that you support legislation aimed at easing the burdens of ALS patients and families. Visit the ALSA website and sign up to be an ALSA Advocate. ALSA makes it so easy to help with form letters that take just a few minutes to send. These efforts focus on issues like changes in Medicare requirements, support for a national database that would enable researchers to share and access information, and other legislation that would improve access to care and quality of life for ALS patients and families.

Also, our family will be participating in ALS Advocacy Days in May. Please check back on this website for updates about this event. One of the great challenges of Advocacy Days is getting meetings with members of Congress rather than their legislative staff. We will be posting a form letter for you to send to your Congressmen and women asking them to set aside time to personally meet with ALS patients and families on Capitol Hill. These face-to-face meetings are a powerful opportunity to effect change.

Generous Offers
For those who have generously proposed help in other forms, please bear with us. We are still (and for many days will be) wading through the thousands of messages and emails. We appreciate each and every offer (though we are wondering whether the offers to clean our kitchen are perhaps subtle digs at our housekeeping skills! J). 

While we understand the feelings of visitors to our site who have expressed a desire to help our family directly, we encourage you to consider donating to the Les Turner ALS Foundation. Our family has benefited tremendously from the services and equipment loans from the Foundation, and we know so many other families who, like us, are grateful for the wonderful resources the Foundation provides through this difficult journey. Further, the research supported by the Foundation holds promise for all ALS patients and families.

Our intent in raising awareness about ALS and how it affects our family is to benefit ALL families dealing with this insidious disease. While we are the example you have read about, we are representative of thousands of other families throughout the U.S. and around the world. Please help them all with a donation to the Les Turner ALS Foundation!

Aimee's Walk4Life Team

Again, we thank you so very much for your heartwarming response, and we wish each and every one of you great health and happiness in your lives.

Aimee and Jim Chamernik

Again, we thank you so very much for your heartwarming response, and we wish each and every one of you great health and happiness in your lives.

Aimee and Jim Chamernik

Analogy Contest Winner
My niece, Rachel, won the analogy contest: The pace of guestbook entries and emails has been “like in the first Harry Potter movie, when the letters from Hogwarts are flying into the house through the fireplace and shooting through the mail slot and Harry’s running around trying to grab one as they fly around the house!” Yes, Rachel, that’s exactly how I feel!