Immediately after our mother told my brother and I that she had been diagnosed with a fatal disease that had no cure and was given just 2-5 years to live, is when we decided to take action… to somehow make a difference.
In February 2004, our 38 year-old Mother was diagnosed with ALS, Amyotrophic Lateral Sclerosis, (A.K.A. Lou Gehrig’s Disease), a fatal disease, which unfortunately has no cure. ALS is a progressive neuromuscular disease that attacks the nerve cells & pathways in the brain & spinal cord. When these cells die, voluntary muscle control & movement dies with them. Patients in later stages are totally paralyzed. Most patients live only 2-5 years after diagnosis.
Our mission is to find a cure for this devastating disease by raising funds & awareness. My brother and I, at ages 11 & 13, decided to get involved and established our “Kids4Cure” platform. We encourage kids/teens to join in our fight against ALS.
Over the past four years we have raised over $235,000 for the ALS Association through the ALS Walk to D’Feet ALS, Dinner/Theatre events, Raffles, Root Beer Float Sales, Corporate Sponsorships, Door to Door Soliciting and other avenues. The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against ALS. ALSA provides support through research, patient and community services, public education, and advocacy.
We have had other kids make great contributions, through front-yard lemonade stands, roller-skating house to house in the neighborhood, making presentations at church, and even asking for donations instead of birthday presents at their parties.. We have seen first hand how young people can make a difference. The fight against ALS is a huge fight since the cause or cure is unknown. We need supporters of all ages and hope that by getting young people involved, they will continue the fight throughout their lifetime or until a cure is found.
At any one time as many as 30,000 Americans will have ALS. This is a fact. Because a relatively small percentage of the nation’s population is afflicted with this fatal disease at one time, ALS receives very little publicity. Not many are aware of ALS, while it is perhaps the most devastating diagnoses one can receive.
The truth is that the ALS community maintains a moderate population because its victims are constantly losing their battle with the disease. Every 90 minutes, ALS claims another life. This is a fact. The average person with ALS loses their ability to walk, speak, and breathe within two to five years after diagnosis. This is a fact. However these facts do not catch the attention of the public and government officials. When it comes to research funding, ALS is not at the top of the list to receive it because only 30,000 Americans currently have it.
This is why we are also teen ALS advocates. We have traveled to Washington D.C. for the past 3 years to meet with members of Congress about key legislature involving ALS patients & their families. During our trips to Washington, we have led conference sessions on “Teen Advocacy” to help educate other teens how to help “Strike out ALS”.
We will continue our fundraising & advocacy efforts until a cure is found. Our next project is to roll out our “Strike Out ALS” Paper Baseball Campaign. We will send mailings to headquarters of retailers asking them to sell our paper baseballs that say “I Pitched In to Strike Out ALS” at the point of purchase. Baseballs would be sold for $1, “autographed” by the consumer, then displayed on a “Wall of Fame” in-store. The funds raised would go to research to help find a cure. This would also create awareness and educate other about ALS. We hope to travel to meet with key decision makers in person to present the ALS story and ask for their support.
Our initial intentions for embarking on what has become a life-changing experience was to search for a cure and bring awareness to this terrible disease simply because our mother had been diagnosed with it. However, we have since made friends and lost friends on this journey. My brother and I have seen ALS patients in their latest phases of life. We have seen the innocence and helplessness that exists within these victims and realize that although this disease hits close to home, we are now advocating for more than just our mother. We advocate for the friends we have lost, the friends we have now, and all those who are victims of ALS. We speak for those who cannot speak, whether it be because they have passed away, have been immobilized, or have simply lost the power to do so. For hope that those who have ALS, such as our mom will outlive the disease, we have made it clear that we will live out our mission until a cure is found.
Paul Carey - Age 17