The ALS Guardian Angels Foundation, a 501(C)(3) charity founded in 2007 by retired drug company executive Stuart Millheiser, 63, of Orange County, California, knows that most ALS related organizations are dedicated to finding a cure for the devastating neurodegenerative disease. However, until such a cure is found, he also know that ALS patients need help living. Mr. Millheiser’s foundation is dedicated to helping patients and their families not only live with ALS, but maintain the best quality of life possible.
Because medical expenses associated with ALS can be so devastating that parents are often unable to afford providing themselves or their children with a happy holiday experience, Mr. Millheiser and the ALS Guardian Angels have been helping these families enjoy happier holiday seasons for the past decade, relieving them of some of the financial burden associated with the disease by providing assistance with medical equipment, vacation time or other respite, transportation, basic living needs, or home modifications.
A profile article by The Orange County Register’s Samantha Dunn notes that while neither Mr. Millheiser nor anyone in his family has the disease, he donates his own time and money to helping those affected by ALS, and also raises funds through his organization. The ALS Guardian Angels encourage individuals and communities to donate in the memory or honor of anyone they may know who has been affected by the disease, or simply just to help out. They also encourage donations of medical equipment, which can be a major expense for those struggling with ALS.
And the aid is welcome. As one mother struggling with ALS told Mr. Millheiser and the ALS Guardian Angels last year: “Do you know what it feels like to know that your children are the only ones who won’t be happy on Christmas? That’s what Christmas has been for us for the last two years. Now they’ll have the best Christmas of their lives. Beyond anything they could ever imagine. I have ALS and I can hardly get out of bed. I know I’m dying. But you and your angels just made me the happiest mom in the world.”
Mr. Millheiser says the woman’s reaction is the exact reason he founded ALS Guardian Angels Foundation — to help countless parents like her caught in difficult circumstances, and it aims to continue helping many, many more.
Mr. Millheiser, who has been referred to as “a true angel on earth” for his charitable work, says he feels a sense of accomplishment by helping those in need. Like the ice bucket challenge that went viral during the summer of 2014, Mr. Millheiser wants more people to become aware of ALS and support the Foundation’s truly important cause.
ALS (amyotrophic lateral sclerosis), originally identified by the French physician Jean Martin Charcot in 1874, is commonly referred to as “Lou Gehrig’s disease” in the United States after legendary baseball player Lou Gehrig, who played 17 seasons as first baseman for the New York Yankees and died from ALS in 1941.
According to the University of Pittsburgh Live Like Lou Center for ALS Research, ALS attacks nerve cells in the brain and spinal cord, causing motor neurons, which control movement of voluntary muscles, to deteriorate and eventually die. When the motor neurons die, the brain’s ability to initiate and control muscle movement dies along with them. With muscles no longer receiving the messages they need to function, they gradually weaken and deteriorate. This damage leads to loss of mobility, impaired breathing and swallowing, and increasing paralysis that ultimately results in death.
Some ALS patients retain more limb involvement early on, while those with a bulbar version of the disease will experience difficulty speaking, chewing, and swallowing. Patients in later stage ALS are paralyzed, although their minds remain unaffected. Typically, the cause of death from ALS is denervation of the respiratory muscles and diaphragm.
Most cases of ALS appear to strike randomly and are not genetic, however there is a small percentage (about 5% to 10%) of cases due to known genetic mutations, meaning if one family member has it, chances are other in the family will also be diagnosed. Although the percentage of people affected by familial ALS is very small, the consequences are dire.
The Live Like Lou Center for ALS Research notes that there is currently only one drug specifically approved by the FDA for ALS treatment, with therapy generally limited to supportive care (i.e., relieving symptoms and addressing quality-of-life issues). Some 5,600 people in the United States are newly diagnosed with ALS each year (approximately 15 new cases a day) and it is estimated that as many as 30,000 Americans are living with the disease at any given time.
Mr. Millheiser offers people recently diagnosed with ALS these tips on preparing to live with the disorder and its consequences:
• Use your friends and family as a support system. Something as simple as spending the day with a loved one can put a smile on your face and put your mind at ease. While it may be hard for them to understand the disease, open communication is key to expressing how you are feeling and how they can assist. Your family and friends want to comfort and support you, so asking for help in any aspect of your life helps both you and your primary caregiver.
• Don’t let ALS control your life. Continue to cross items off your bucket list and take part in activities that will bring you joy. If the disease begins to worsen, your may have limitations that restrict what you can do. So newly diagnosed patients have time to take that trip of a lifetime or fulfill a lifelong wish. Positive thinking may seem difficult at first, but it will allow you to make peace with yourself and consequently better your daily experiences. Remaining optimistic and hopeful can make a world of difference — you never know what the future may have in store.
• Control your emotions, to a certain extent. Not being too hard on yourself is important. Being diagnosed with ALS may initially bring fear, anger, shock, sadness, and uncertainty. While these feelings are completely normal, preventing them from dominating your day-to-day mood and experiences is key. Remember, there is always hope for bright future and a favorable outcome — a medical breakthrough could occur at any time.
For more information, visit:
ALS Guardian Angels
The Motor Neurone Disease Association
Live Like Lou Center for ALS Research
The Orange County Register