It was a year ago on my mom’s birthday, October 12, that I publicly announced my intent to establish a non-profit to keep her memory – and legacy – alive. In early 2016, Marilyn’s Legacy: A World Without Alzheimer’s was born, and shortly thereafter, we were granted tax-exempt status under section 501(c)(3) of the federal tax code.
Our inaugural fundraiser was a great success, and we’ve been pleased to contribute $900 to UsAgainstAlzheimer’s this year. This is an organization near and dear to my heart. I have co-moderated their online support group for three years and have come to know and deeply respect their tireless, determined leadership team. Founders George & Trish Vradenburg personally cover 100% of overhead expenses, ensuring that every dime contributed goes directly toward the goal of ending Alzheimer’s by 2020.
We are optimistic about the potential of preventative and disease-modifying drugs in the pipeline; however, in 2017, Marilyn’s Legacy will broaden our mission slightly. We will seek out opportunities and projects to directly benefit individuals currently living with Alzheimer’s and other forms of dementia.
While a focus on research funding remains critical to our organization’s purpose, we also recognize that millions of Americans are currently in the throes of the illness and need help now. For them, the therapies won’t come soon enough. We feel our mission statement should reflect our profound and passionate belief in person-centered care and each individual’s right to the best possible quality of life at every stage.
This December will mark four years since my mom left this earth, and there are days when it still doesn’t seem real. I suppose people think it should get easier, but I’m not sure that’s the case. Indeed the intense, searing pain subsides over time, but it gives way to a dull ever-present ache. With each milestone or important life event, the list of things I want to share with her grows. Even the mundane, routine happenings can be a stark reminder of her absence and the void in my heart that will never be filled.
Weeks like this are difficult. Mom would have celebrated her 80th birthday on October 12. I’m feeling especially emotional, but equally tenacious. I won’t rest until people understand the devastation of this disease. If your life hasn’t been touched directly yet, count yourself among the lucky ones, but also realize the odds are not in your favor. In the United States, someone develops Alzheimer’s every 66 seconds.
Because of my mom’s birthday, we’ve chosen October for our Annual Giving Campaign. Will you help Marilyn’s Legacy change the trajectory of this disease? Will you join the fight to end Alzheimer’s and to support the families currently living its torment on a daily basis? Those who know me well know I find it very difficult to ask for help, but this is one area where that is not the case. I need you. WE need you. Please consider making a tax-deductible contribution today by visiting http://marilynslegacy.org/donate. Thank you!
“ … at age 59, I was diagnosed with early onset Alzheimer’s after a serious head injury doctors say unmasked a disease in the making. Years earlier, I had a front row seat as Alzheimer’s devoured my maternal grandfather and my mother. Now it’s calling for me.” ~Greg O’Brien, author On Pluto: Inside the Mind of Alzheimer’s