May is ALS Awareness Month and the ALS community is seeking the help of individuals willing to participate, advocate and donate to advance the fight toward a world free of amyotrophic lateral sclerosis, commonly known as “Lou Gehrig’s Disease.”
The ALS Association is a national non-profit organization dedicated to building hope and enhancing quality of life for those living with this devastating progressive neurodegenerative disease, while also aggressively searching for new treatments and ultimately a cure.
The association says enhanced awareness is critical to its goal of ending ALS, noting that, for example, the U.S. government is the single-largest source of funding for ALS research and care. ALS advocates play a critical role in securing and sustaining federal funding, and the association notes that personal stories and passionate testimonials help demonstrate to members of Congress why more must be done to support the quest for a cure for this disease.
In ALS the disrupted motor neurons eventually die and the ability of the affected individual’s brain to initiate and control muscle movement is progressively lost. Patients in later stages of the disease may become totally paralyzed.
Through its nationwide network of chapters, the ALS Association provides a comprehensive range of patient services and support to the ALS community as part of its mission lead the fight against ALS through global research and nationwide advocacy, while also empowering people with ALS and their families to live fuller lives by providing them with compassionate care and support.
The association is currently funding some 100 active research projects, selected through a peer review process involving top ALS scientists, and is at the forefront of the global research effort to find treatments and a cure for ALS through its Translational Research Advancing Therapies for ALS (TREAT ALS) program, which has funded more than $99 million in research and clinical management projects since 1985.
The association suggests that volunteers willing to take part in the ALS Awareness Month consciousness-raising effort can help in several ways:
Education: Education is a key element of ALS awareness. The association observes that many people, even if they have heard of ALS, have only a hazy conception of what the disease is or what life is like for persons living with it. So, they created a short video that explains ALS signs and symptoms that can be shared through social media, email or posting on a volunteer participant’s personal blog or website. (The association requests that whenever you share or post something about ALS awareness, you be sure to include the hashtag #ALSaware, which will make it easier for people to find more information about the disease.
Color It Red: Another way to increase ALS awareness is to change your Facebook Status to red — the association’s official color. A new Facebook feature allows you to adopt this attention-grabbing color scheme to help forward the cause. You also can post red status updates about ALS Awareness Month and and invite friends to pitch in. Click here for instructions about changing your Facebook status background color:
The ALS Association also will publish blog posts throughout ALS Awareness Month with information about recent advances in research, inspirational stories from people living with ALS, and ways that people can learn more about the disease and encouraging people to get involved. A way for supporters to help in spreading the word is to simply share these blog posts on their social media accounts.
Fundraising: One of the biggest contributions anyone can make in the fight against ALS is to help raise funds for research and to supply essential services for people living with the disease. Participant supporters can join an existing fundraiser or start one of their own, such as one of the hundreds of local walks to defeat ALS. Ones near you can be found here.
For those looking for something more challenging than a walk, there are Team Challenge ALS events involving activities such as marathons, triathlons and bike rides. For more information, visit Team Challenge ALS.
Establish A Community of Hope: You also can launch your own tribute fundraiser to honor someone’s battle with ALS. You can find information about starting a fund or contribute to an existing fund at this link.
One Dollar Difference: You can set up a custom fundraiser of your own with the ALS ASsociation’s One Dollar Difference platform, which provides online tools to build your own ALS fundraising web page with pictures and text, suggestions on setting a goal, and using tools to advance that goal.
Some may choose the simplest way to contribute to the fight against ALS: A personal donation. The association says that by giving now your donation will have double the impact because one of its national partners, Quantum Rehab, is offering to match individual donations, up to a combined total of $50,000.