I am Marilyn Sanford
living with ALS
Although confined to a wheelchair, I still maintain my active tax practice, preparing individual, corporate, and trust tax returns as well as representing clients at IRS audits.
I was diagnosed in 2008 at the age of 66 but, looking back, had showed definite symptoms in 2007 or earlier. I had retired a few years prior after a long career in Human Resource Management that included positions in the fields of health care, the Federal government, higher education, and high technology. But rather than slow down and enjoy retirement, I started a second career in tax and financial planning. I became an IRS Enrolled Agent (EA), earned a Certificate in Financial Planning, and obtained my Series 7 and Series 65 securities licenses, as well as my Life and Health Insurance licenses. I started my own business as a tax and financial advisor (Ames Hill Tax Services) and also began teaching Finance, Accounting, and Investments as an Adjunct Instructor at several colleges and universities in the greater Boston area.
By 2010 I was no longer able to walk at all, and had to rely solely on a power or manual chair, as well as a scooter. I decided to become involved in ALS advocacy with the local chapter of the ALS Association. I spoke to groups of scientists at Biogen Idec in Cambridge, MA on the topic of living with ALS, and was interviewed by the Boston Globe and WBUR when Biogen discontinued the Dexpramipexole trials. I also attended the NEALS Consortium’s first Clinical Research Learning Institute held in Clearwater, FL in October 2011.
In addition, I spoke to groups at various other fundraising events sponsored by organizations such as ALSA, the ALS Therapy Development Institute (ALSTDI), etc. and represented these organizations at ALS events at Fenway Park. Because of my visibility as a pALS, I was elected to the Board of Directors of the ALS Association’s Mass chapter, and currently serve in the capacity of Secretary.
Although confined to a wheelchair, I still maintain my active tax practice, preparing individual, corporate, and trust tax returns as well as representing clients at IRS audits. When I realized it would be too difficult to travel to and from the various campuses at which I taught, I applied and was hired as an online instructor by the University of Phoenix, where I have been teaching Personal Financial Planning since 2010. At this point in time, after living with the disease for 8 years, only my legs are affected. I still maintain my upper body strength, and my ability to speak, swallow, breathe, etc. remains completely normal. Somehow I can’t help but feel that this slow progression might be due in part to the upbeat, positive outlook I strive to maintain, and the fact that I keep very busy with my family, clients, students, attending online CPE seminars (to maintain my professional licenses), and ALS fundraising.