CCSVI ALLIANCE - Key Persons
I am a Professional Civil Engineer, who has spent countless months and years researching, evaluating, and implementing innovative transportation solutions for the 21st century. I have two beautiful, intelligent, athletic girls, and being there for them actively is a definite goal of mine. I have this "stretch goal" to one day show them, that their "athletic speed" came more from me than their mom.
I began to get involved in multiple sclerosis (MS) research, shortly after being diagnosed with the disease in 1993. For over 10 years, I have struggled with the "neurological" disease and drugs, since there was very little or nothing the neurologists could do about my "brain fog", "dizziness", "cognitive struggles", "fatigue", "balance", and my overall quality of life. Although a research drug called Zenapax, kept me from being wheelchair bound, and Tysabri kept me stable, the latest/greatest drugs, seemed to be at best, a slow, losing battle.
When I learned of CCSVI, the "improved flow" concept made way too much sense to me. As a Civil Engineer, I know how critical flow is, whether it be water or traffic flow!! Thank you Dr. Zamboni, all the pioneers, and social media for helping to bring CCSVI forward. As a fairly recent member of the successful CCSVI treated family, and the newest member of the CCSVI Alliance Board, I am truly honored to be a part of the CCSVI movement. I so look forward to working on the "vascular" side of the equation. For now, I am enjoying playing golf again (after being unable to play for years).
Bruce Makous, ChFC, CAP, CFRE, has been a professional fundraiser for twenty-nine years, and in 2009, he was honored by The NonProfit Times as one of the "Most Influential and Effective" fundraisers in the US, recognition reserved for only 14 professionals each year. He currently serves as a consultant, Barnes & Roche, Inc., Rosemont, PA, and as Director of Development for the ACLU of Pennsylvania. Prior positions have included Vice President for Development, Multiple Sclerosis Association of America; Major Gifts and Planned Giving Officer with the American Association for Cancer Research; Assistant Vice President for Major Gifts and Planned Giving with Drexel University; and Director of Planned Giving with The American College in Bryn Mawr. Mr. Makous co-authored the chapter on "The Ask" in the award-winning AFP/Wiley textbook, Donor-Centered Planned Gift Marketing (M. Rosen, 2010), and is a published author on many development topics, including articles in Advancing Philanthropy, Planned Giving Today, Trusts & Estates, and the Journal of Gift Planning. He has taught charitable planning in The American College's Chartered Advisor in Philanthropy (CAP) graduate level program from 2002 to 2004, and his articles are included in the course material. He speaks at many conferences, most recently the 2013 Planned Giving Day for PPPGP, 2012 New York Philanthropic Planning Symposium, and 2012 Chicago Council on Planned Giving Luncheon, and 2011 National Conference on Philanthropic Planning. He was moderator and faculty member for the AFP/Villanova University program from 1998 to 2002, and a lecturer in the Drexel University graduate program, speaking on planned giving writing from 2000 to 2002. He is a past national board member of Partnership for Philanthropic Planning, past international board member and officer of the Association of Fundraising Professionals International, past president of PPPGP, and past president of AFP Greater Philadelphia Chapter. Mr. Makous has a masters degree from New York University and undergraduate degree from Oberlin College, and has been granted the Chartered Advisory in Philanthropy (CAP) and Chartered Financial Consultant (ChFC) by the American College, as well as certification by the International CFRE Board.
I received my B.A. in Psychology from Miami University in Oxford, OH in 1988, and later graduated Cum Laude from The John Marshall Law School in 1993. During my first year of law school, I received my multiple sclerosis (MS) diagnosis. I experienced relatively mild exacerbations until March 2003 when I was forced to begin using a cane. In 2010 I underwent my first CCSVI treatment, after which I experienced enormous improvements.
Since that time, I have experienced restenosis and undergone additional procedures, none of which have resulted in the same enormous improvements. Nonetheless, I am convinced that CCSVI is an important piece of the MS puzzle. I became a volunteer and then CCSVI Alliance Board member because I am committed to educating others about CCSVI and its relationship to MS, as well as other diseases.
In what spare time I have, I enjoy riding horses, taking part in animal rescue, and spending time with my husband and son.
I became interested in multiple sclerosis (MS) research when my husband Jeff was diagnosed with MS in 2007. I noted a connection of Jeff's disease process to his circulation and blood, and by accessing medical journals on the internet and stacks of books at my local library, I put together research to address this. I sent my theory and research, called the Endothelial Health Program, to universities, and began a correspondence with vascular specialists at Stanford University. Jeff was the first American treated for CCSVI, and he is now four years past his venoplasty, with no further MS progression and relief of many symptoms.
Jeff and I met and married as students in music school. Jeff is now a multiple Emmy award winner as a composer for film and television; currently scoring Netflix's new series, House of Cards. I continue to serve as an advocate for those with MS, while I work professionally as a studio singer, singing on hundreds of films, commercials and television programs. I'm most proud of my role as Mom to son Henry, who is joining his parents in his collegiate pursuit of music, as a jazz bassist, composer and singer.
Multiple sclerosis (MS) is a family matter for me ... I have a brother and a grown daughter with MS. I was diagnosed with secondary progressive MS in 2003. Unfortunately, the current approved MS drug therapies offer little to no benefit to those of us with secondary progressive MS, therefore I became interested in Dr. Zamboni's theory of CCSVI and its relationship to MS. To my good fortune, my daughter and I were treated for CCSVI in 2009 at Stanford University Medical Hospital. In March 2010, I joined the Board of CCSVI Alliance. I take pride in the role the organization has taken to further the exploration of CCSVI and its relationship to neurological disease and I am optimistic that, long term, our work will benefit future generations.