Voices for Faith
Organized by: Heather Burns
Tax Deduction Information
April 18, 2017
Faith is a loving wife and Mother of three who has been diagnosed with Multiple Sclerosis. She is an actress, singer and teacher who has touched and inspired many children . Her MS has effected her mobility which has not only had an impact upon her quality of life but on her career as well. Multiple Sclerosis (MS) is caused by an immune mediated attack targeting components of the myelin sheath. The myelin sheath is known to act as an “insulator” for neurons so that they can communicate properly with each other. There are a few approaches currently that may reduce the severity of disease but they do not repair the damage to nervous system tissue that has already occurred and therefore they cannot cure multiple sclerosis. Faith has been chosen to participate in a program in Panama that is working with stem cells that have immune regulatory properties that helps to repair and re-generate the myelin sheath and essentially may help in the development of a cure. Of Course, since this program is in Panama, Health Insurance does not cover the cost of treatment, travel or room and board. Each treatment and trip to Panama will cost roughly $25,000 and it has been suggested that she will probably have to go twice. Now anyone who actually knows Faith understands that she will go above and beyond for other people but will never ask for help of any kind for herself. However, as her business partner, co-director and one of her closest friends I have no shame in asking. Selfishly, I will get down on my hand and knees and beg if it means I can get her to help me work on sets again. So, be you family or friend, fellow performer, a student who she has inspired great things or someone who just loves to hear her beautiful voice, please consider donating today. MS can get worse with time so the sooner we can reach our goals the less the doctors have to try and reverse. If anyone is interested in reading up on the treatment program you can find it here https://www.cellmedicine.com/stem-cell-therapy-for-multiple-sclerosis-3/
A message from Faith's husband Jon:
To all my family, my closest friends, colleagues, and all those friends out there who are not too far removed by connections to friends we all have in common:
I need to share with all of you something that is hard to accept but nonetheless a new reality for myself and my lovely wife Faith. Faith and I have been in a major struggle for the past 6 years which to this point has remained mostly private since there is such finality in its ramifications...just saying the statement audibly lays down a path that has turned out to be a true gauntlet, offering physical pain and hardship for her at every step.
We received the official diagnosis in June 2014…My wife has Multiple Sclerosis…and…since the diagnosis came after a multi-year elimination of other possibilities, the doctors labeled it “Intermittent Relapsing”, which is a form that many patients can manage reasonably well with medication. Well, medication did not even touch Faith’s condition, other than creating more fatigue and side effects. Sadly, her condition is getting worse by the day. We fear it is the worst of 5 types of this disease, known as “Progressive MS”…all doctors will confess: there is no medication which can truly treat or manage Progressive MS. I will be honest…even though I have been by her side for every step, part of me does not want to acknowledge the very real effects of this disorder and the absolute desperation that my Faith Ann is feeling…so many of her friends found it hard to believe since she is so stubborn and does her best to hide any ill effects in her daily life. She’s one of those people who is not used to asking for help since she is the one facilitating…for her daughters, our son, her family, her students, her audiences.
In 2010, a few months before Darios James was born, Faith started having trouble with her right leg and foot…she was walking up the incline in our yard and as her mind was “at the door already”, she realized her physical body was still 30 feet behind her, struggling to get her legs to carry her to our house. The first very real diagnosis was Lyme Disease. Since that time, we treated her for 3 co-infections of Lyme Disease, tried 2 different diets, have tried comprehensive nutritional supplement plans, and administered prolonged anti-biotic treatments on the chance that a pneumonia bacterium was deeply imbedded in her system. Our most recent effort was a vein therapy that was successful after 2 attempts, but like all of our previous attempts, has not yielded any abatement of Faith’s pressing condition. We have now removed our basement steps in order to make room for a home elevator and spiral staircase…She is to the point that 2 trips up and down steps requires a 2 hour nap just to replenish the energy finish her day. Yep, this is real. Regardless of the origin, the result is the same…Faith has major damage to her myelin sheath around her spinal column in her lower back…that sheath is the insulation for her nerves…as it disappears, her nerves misfire and the struggle to find other muscles, nerves and pathways to move about completely drains her physical strength…all while her mind is racing with research, desperation, possible solutions, and any way to find relief.
Here is our next most promising hope: there is a stem cell institute in the country of Panama, run by American doctors…their research and treatments hold the only true hope for us. In the US, stem cell work is very restrictive and politically charged to the point that no extended treatments are available. The Stem Cell Institute of Panama has accepted Faith as a candidate, but 1 trip would cost up to $25,000. There is a good chance she may need 2 trips. As you may already have guessed, this is not covered by insurance…none of our efforts have been covered by insurance to this point. She has told me that she may not be able to support herself on her own 2 legs in a few months…once patients get to a certain point, our research has shown that damage can be irreparable so time is so urgent. Here it is:
Our dear friend and colleague Heather Burns started a funding campaign on Faith’s behalf called “Voices for Faith” at the following link:https://www.crowdrise.com/voicesforfaith Faith would never ask for this magnitude of help on her own, so I am teaming with Heather to organize a number of live musical events to raise awareness and inspire our growing community of friends to come together in this effort. In 5 weeks, we’ve raised about 25% of what we need to get her to Panama at least once…Thanks SO Much to all of you who have contributed to this point…your generosity is humbling and truly inspiring. We are still a long way from our goal of $50,000. Heather and I basically need 3,300 people to give $15 each…a community effort. The payoff: the chance to give Faith some real hope that she can walk out onto a stage again…real hope that she can stand and deliver life-changing lessons to the students that she directs with Heather…real hope that she can one day ride a bike with her energetic and beautiful son Darios.
One of the hardest things to do in life is to ask for help, and I know so well the struggles that so many people have on a daily basis…as I write this plea, know that she and I are standing with our backs against a massive wall, and we now know that it will take the efforts of a whole community to fight back for the opportunity to offer Faith some semblance of a normal life. In 2006, many of you witnessed my vows to her…she is my greatest love and I will stand by her through all that life has in store. On her behalf, I ask you now: Please consider giving something to this cause. I will be posting updates on our efforts, fun stories about this courageous woman, and dates for musical events that we will be creating…Hope to hear from all of you. Best wishes to you all.