In 2002, the FDA approved a surgical procedure for the treatment of Parkinson’s called Deep Brain Stimulation. Sarasota Memorial Hospital was one of the first hospitals in Florida to invest in the equipment and personnel required to perform the procedure and by 2006 the hospital maintained a state of the art surgical program for Parkinson’s. It was the success of this program and the excellent reputation of the Sarasota medical community that drew Dr. Sutherland and I to Sarasota. It was immediately apparent to me that we had four national Parkinson’s foundations, one headquartered in Miami and another here in Sarasota, all actively operating in our community but providing no tangible services to patients. This also had not gone unnoticed by patients who, as their numbers on the Suncoast rose, were increasingly interested in taking a more active role in their health. This became a hot topic discussed at many dinner tables and restaurant outings.
Most importantly we saw that without the help that a charitable endeavor can bring, Sarasota might miss the chance to bring patient-centered rather than profit-centered resources to patients and patients would most certainly miss the opportunity to live more fully and openly with a disease that despite how positive we try to be about it, ultimately takes more than it gives.
In 2006, we talked. In 2007, we raised the thousands of dollars needed from personal friends (like my gym partners!) to hire those professionals required to make Neuro Challenge Foundation into a non-profit corporation, plus a logo, a website, letterhead and a Board of Directors — but no office, except for the one at my home. Also in 2007, Neuro Challenge contracted for space to open a weekly Parkinson’s Clinic at Sarasota Memorial’s Institute for Advanced Medicine. The clinic housed a doctor, nurse, physical therapist, speech therapist and receptionist and was dedicated solely to treating the special needs of Parkinson’s patients. Three volunteer nurses and a physical therapist provided resource referrals and advisory services to patients and their families.
It took nearly a year of legal banter to get the IRS to approve our non profit status but when they did, it was now 2008 and we held our first public fundraiser at The Met on St. Armand’s Circle sponsored by the New York designer, Lafayette 148. A golf tournament followed and before long Neuro Challenge Foundation was able to hire a fabulous grant writer who opened the door to many opportunities for financial growth.
In 2009, Dr. Sutherland was asked to oversee the direction of an Integrative Medicine Program for Parkinson’s at SMH’s Institute for Advanced Medicine. The program would include various forms of exercise for Parkinson’s all provided by specially trained professionals in a medically safe and secure facility. Dr. Sutherland formally took on the role of Medical Director and brought the developer of the Lee Silverman Voice Training Program (LSVT-BIG and LOUD) to Sarasota that same year and Sarasota was first in Florida to provide this revolutionary rehabilitation program to patients.
In 2009 we co-sponsored the Annual Parkinson Symposium with Sarasota Memorial Hospital, generating a period of unprecedented outreach resulting in the symposium drawing the largest crowd in the southeastern United States. During this period, Neuro Challenge Foundation brought in a number of highly sought after scientific speakers and hosted annually a number of Speakers Series Events boasting audiences of 200-300 visitors each, a health fair attended by another 400 people in addition to the very successful symposium. Unfortunately, this was all still being done from the desk in my home office and the Starbucks across from Michael’s on East where I held most of my meetings. You’d be surprised at the number of regulars there are at Starbucks.
By 2010, we had the support of many local organizations and donors from all parts of the community who were very generous. This was truly turning out to be something great! I think the Sarasota County Hospital Board felt sorry for us or more likely could not figure out how we were doing so much with so little so they allowed Neuro Challenge Foundation to officially take up residence inside the Institute for Advanced Medicine — which was good because my family was running out of enthusiasm for the ever growing amounts of paperwork floating around the house. At this time, there were an overwhelming number of people who wanted to help or be helped and a whole lot of people who wanted to hear our story or tell our story. We are going to be grateful to the local papers, magazines and TV stations for a long time.
We are going to be forever grateful to everyone who donated money when they didn’t know whether or not things would work out. We are going to love every person who donates today because they know what kind of good they make happen when they donate to Neuro Challenge Foundation. Everybody can do something and Sarasota is a funny place to do such things.
I went to a party just around the time I was starting Neuro Challenge Foundation and there were a lot of charity people and press people there at my friend’s home. There’s a funny man who writes for one of the local magazines and he leans over to me and says,
Him: So all of a sudden I see you everywhere and you’re starting a foundation. You can’t do that around here, you know. It’s REALLY hard.”
Me: (I have nothing to say, because I am now embarrassed).
Him: Oh, I know, you’re rich, right? You have a trust fund, right?
Me: (I am wondering how I can get out of here without my friend noticing) “Well, no. Not exactly.”
Him: “Then what’s your plan?”
Me: “Let me tell you about my friend who has Parkinson’s.”
Following the six years of hard work founding Neuro Challenge Foundation, Inc. by Doreen Sutherland, the Board of Directors looked to hire a professional Executive Director.
It was in 2012, a pivotal and transformational year for Neuro Challenge Foundation, Inc. that, then board president, Doreen hired Judith Bell and the board ratified her as the Executive Director. Those efforts of the founding board members, and the hiring of Care Advisor Jennifer Williams, along with part time bookkeeper Sheri Penxa and Executive Director Judith Bell, all working closely under the guidance of Medical Director Dr. Dean P. Sutherland, began the journey of organizational and programmatic growth. 2012 saw the emergence of a new data management system, a new website, IT system, personnel policies, financial systems and the addition of additional board members. The Giving Partner profile was completed which required policies and procedures to be in place and ratified by an active Board of Directors.
2013 and 2014 growth was in the air. The budget grew due to the recognition of loyal supporters, families, foundations, Sarasota Memorial Healthcare System System and local companies and allowed for expansion into South County. The office located in North Port almost immediately drew the attention of the community. Over 200 patient families emerged in the first six months. Care Advisor Carisa Campanella expressed the appreciation of those living in South County by stating… “They just didn’t know where to turn until Neuro Challenge began offering caregiver support groups, patient groups, educational programs and bringing in distinguished speakers”. The Executive Director, Judith Bell, Care Advisors Jennifer Williams and Carisa all became full time employees during this time due to the ever growing demand for education, support services and programming. Pedaling with Parkinson’s, a research based program, was offered and instructors at YMCAs and HealthFit were trained, a HIPPA compliant patient data base was implemented, critical to maintain adequate records and a confidential donor data base purchased to honor the code of ethics of donor confidentiality. The board grew in size and sophistication…these were pivotal years. The Care Advisor continued to work in the Southeastern Center for Parkinson Disease 3 days per month, a convenient opportunity to those newly diagnosed or those progressing who wished to seek out additional help; whether it be home care recommendations, physical therapy recommendations or a listening ear.
2014 – 2015 again growing was paramount. A new office at 5602 Marquesas Circle, thought originally to be too large, soon filled with a PT bookkeeper, newly hired Office Administrator Sara Weinberg, storage for the numerous printed publications which were being produced, volunteers, student interns and the Full Time Executive Director. The programs started to expand in Manatee County due to demand. Beginning with one monthly program, PD in Motion was added, monthly Caregiver support , monthly Patient support groups were added, Yoga and a Parkinsons Café all offered Manatee County residents the community of support which had been so welcomed in South County. Neuro Challenge Foundation then changed its name to Neuro Challenge Foundation for Parkinson’s, fully embracing the single disease focus and offering targeted services to those families.
2016. Every year since 2012 the budget has grown by $100,000 to a new high in 2016 of just under $500,000. The two local Community Foundations hold and invest for Neuro Challenge Foundation operating reserves of approximately $175,000 and the organization routinely has about 25 programs every month, up from 2 – 4 in 2011. All due to the public’s recognition of the growing incident of Parkinson’s, the efforts of a dedicated staff of 4, a volunteer core of 20 and the reputation of solid, sophisticated, medically sound programming. After four years of working to develop solid governance practices, staff and personnel policies and training, public relations with the community, medically sound training under the direction of Medical Director Dr. Dean P. Sutherland, the Executive Director, hired in 2012 to bring about this transformation retired. Judith L. Bell, left a legacy and was followed by Robyn Faucy who, with renewed strength, building on a solid financial and reputational foundation is headed to expansion in Manatee County, including Lakewood Ranch, as well as more services in the South County areas of Englewood, Venice and North Port. 2016 served over 2000 patients and family members with Annual Symposium, 3 distinguished speaker events, 25 monthly programs, the addition of the Off Key Chorale, PD in Motion, and Parkinson Café.