ALS Association Asking Public to Share Their Stories

May is ALS Awareness Month

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. It is estimated that as many as 30,000 Americans have the disease at any given time. Although it can occur at a younger age, most people who develop ALS are between the ages of 40 and 75. There is no cure.

The ALS Awareness Month campaign, led by The ALS Association, is designed to make a collective impact on the public and lawmakers regarding important issues facing people with the disease. The theme of this year’s ALS Awareness month is “Create a World Without ALS. Speak Up Now to Give Hope.”

Sharing Your Story

Whether you're a person living with ALS, a family member, friend, or concerned individual, they want to hear from you. In the words of The ALS Association, “visitors to our website understand more about the impact of Lou Gehrig's Disease.” They are encouraging others to write (and read) about the disease to educate policymakers, the media and the public.

Note: When you submit your story to their website, you agree that they can use, share, and make public your story, using only your first name, last initial, city and state. They won’t share or make public your last name, address, phone number, or email address without permission to do so.

For more information about submitting your story, go to: http://www.alsa.org/about-als/2013-aam/

ALS Information Resources

ALS.org Facts You Should Know
http://www.alsa.org/about-als/facts-you-should-know.html

Packard Center ALS Facts and Statistics
http://www.alscenter.org/living_with_als/facts_statistics.html

Boston Marathon Bombing Victim, Ballroom Dancer, Teacher and Amputee Gets Invite from Dancing with the Stars

Adrianne Haslet-Davis Vows to Dance Again

Adrianne Haslet-Davis examines an example of what her prosthetic may look like in the future.

When the first bomb went off, Adrianne was far enough away from the blast to not be injured. Jolted by the sound wave and smoke, she remembers thinking there could be more than one. She held on to her husband standing next to her. A few seconds later, the second blast would tear through her left foot and leg. After being rushed to the hospital, the doctors had to amputate about 5 inches below the left knee.

32 year old ballroom dance teacher Adrianne Haslet-Davis was interviewed by hit show Dancing with the Stars last night, sharing her thoughts on the Boston bombing and the loss of her leg. Inspired by her courage and determination to dance again, the producers invited her to dance on the program whenever she is ready. It's not just an invitation to dance in front of millions of viewers on one of her favorite shows, it's a physical and mental challenge she fully intends to meet.

When she does, Adrianne won't be the first limb loss person on the popular show. Amputee Heather Mills (ex-wife of Paul McCartney) was a contestant on DWTTS back in 2007. Mills was injured in a motorcycle accident in 1993 and also had her leg amputated below the knee. She is now the Vice President of The Limbless Association, a charitable organization in the United Kingdom.

Though Adrianne is nervous about learning to walk and dance again (in a different way), she is extremely confident and positive about her future. She knows the rehabilitation process will take a lot of work and time, but she is resolved to meet the challenge. Our thoughts and well-wishes go out to Adrianne and to her husband, Air Force Captain Adam Davis (also injured but not as serious). We hope to see her on the ballroom floor very soon.

About Limb Loss

Adrianne’s story is an example of how advancements in prosthetic medicine provide hope to thousands of amputees each year. Doctors acknowledge that prosthetics have come a long way in the past 10 years – mainly due to the number of Iraq and Afghanistan War veterans returning home with missing limbs.

To learn more about prosthetics and amputee issues, visit the Limb Loss Resource Center created by the Amputee Coalition.

For 4 Year Old Maya Vasquez, Daily Hurdles Don’t Curb Her Determination

“Heroes aren’t always big brawny guys who save the day.”

Life moves forward at a very fast past for four year old Maya Vasquez. As a little girl with many special needs, she is always on the go. But unlike other toddlers, her busy day is not about play dates and Fisher Price toys; it’s all about doctor appointments and physical therapy. Maya faces daily hurdles that most children her age outgrew at infancy–she is unable to sit, stand, roll over, walk or perform daily living skills without the 24/7 help of her attentive and loving family, and her ability to communicate with them is very limited. But when you meet this beautiful little girl, that’s not what you notice first. When Maya’s soft smile spreads over her face–and it usually does!–you would never know how challenging her life is.

A debilitating combination of Bilateral schizencephaly–a rare developmental disorder characterized by abnormal clefts in the brain’s cerebral hemispheres , –cerebral palsy, developmental delays, and impaired vision have made Maya very dependent on her “wheels”. Since she cannot use her legs or spine to propel her, her wheelchair is her life. And as she has grown, and the chair has gotten bigger, it is becoming more and more difficult for her young mother to fit Maya–and her equipment–in her small car. And there’s always a specialist to see, or a class to attend, or a walk to take with Mom or Dad and dog Molly. Maya even has a role to play at the Center for Disability Services, where she attends preschool. Her sweet disposition and angelic face made her a natural to serve as the Center’s child ambassador for its 2012 Telethon.

Heroes aren’t always big brawny guys who save the day. Sometimes they are beautiful young children like Maya, who inspires those around her every day. She will always have enormous struggles to face as she grows, but it’s clear that she will meet them head on with sweetness and determination. Maya has made tremendous strides since her birth, and her family is convinced she will continue to make progress. Who knows what worlds a wheelchair-accessible van would open up to her?

To vote for Maya, please visit her Mobility Awareness profile page. For you own NMEDA entry, use MobilityWorks DEALER CODE# 64ANK.

Chicagoland MobilityWorks Lends a Hand to Support MDA Muscle Walk

For the last five years, MobilityWorks of Chicago has had the privilege of working with the Muscular Dystrophy Association (MDA). Every year we’ve been a sponsor at their walk in the Chicagoland area. This year, over 1,000 walkers were hosted at Chicago’s beautiful Solider Field, helping to raise close to $220,000 for their cause.

Why They Walk

Most of the festivities were held at the Soldier Field United Club, where they had music, cheerleaders and contests. Everyone gathered to listen to stories of strength for why they walk. A grandmother talked about her two grandchildren that are affected by muscular dystrophy. She walks so that they can hopefully raise enough money before the youngest grandchild loses his mobility like his brother did. Another woman talked about how her child is her hero and always has an amazing attitude. A man shared his story about the MDA Summer Camp, and what that meant to him growing up with MD.

After all the stories, we were able to do our “victory laps” around Solider Field.  What an amazing group of people to work with!

The MDA walk theme is called “Muscle Walk” – designed to raise funds to help the Muscular Dystrophy Association foster research and provide vital services to families affected by neuromuscular disease.

Learn More About MDA Muscle Walk