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 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 askaboutaimee.com
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
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,
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
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.
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
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