My name is Dean Houle and I am the Board President and Chairperson of the Executive and Communications Committees. As President and executive chairperson, I am responsible for the day to day operations of the foundation. As communications chairperson, I am also responsible for all correspondence, social media, website, e-newsletter, public relations and promotional functions of the foundation.
Throughout my adult life, I've tried to give back to my community. Although I am brand new to the non-profit charitable foundation community, I am not new to volunteering. I was a volunteer fireman for over twenty years in my local community. During that time, I was also a medical response technician (MRT) and emergency medical technician (EMT) with the volunteer ambulance for several years.
I am also not new to being a board member. I was elected three times to my local town Board of Education and served for a total of twelve years. This included two years as vice-chairman and two additional years as the board chairman. At the time, our board was responsible for a fifty-million-dollar budget. During my tenure on the board, I chaired or participated on many committees where I devoted many hours outside of regular board meetings. I enjoyed being able to make a difference and giving back to the local community.
Why I joined the MMFC:
I was first introduced to the rare disease community five years ago when my daughter Samantha (the inspiration for the foundation) was diagnosed with moyamoya disease. She was off at college in her sophomore year studying for her final exams when out of the blue she had a stroke. We didn't realize what was occurring initially, but, after a period of several days, we learned that she was experiencing a stroke and would eventually be diagnosed with moyamoya. We were fortunate that the major medical center working with the small rural hospital in her college town knew about moyamoya and she was quickly diagnosed. At the time, there was very little information available about this rare disease. She had to have brain surgery after fully recovering from her stroke.
Samantha, my wife Roxanne and I began advocating for young stroke survivor awareness and moyamoya disease with Samantha’s neurologist. We attended Double-A baseball, AHL hockey and stroke awareness events to advocate for awareness.
Then a couple years later it came back even more prevalent. She again experienced strokes and TIA’s and required additional surgeries. Samantha was able to quickly obtain a surgery slot, because another patient’s insurance declined to let them travel for surgery. While she was in the hospital, her cousin Victoria Warren (an event planner) wanted to do something to help us promote awareness of this rare disease that very few had ever heard of. We originally began discussing creating a large fund-raising event. By 2018, Victoria had begun creating the Moyamoya Foundation Co. and it was approved 501(c)(3) in early 2019.
In January 2020, I joined the Moyamoya Foundation Co. board and was voted in as president. Naturally, giving back to the moyamoya rare disease community which I find myself connected to through my daughter feels right.
My name is Wesley Warren III, and I am the Board Treasurer and Head of the Finance & Audit Committee. As Treasurer and Head of Finance, I am tasked with maintaining the financial accuracy of documentation and reporting for the Foundation. As Head of Audit, I must ensure the Foundation’s Bylaws and Board policies are being followed; ensuring operations and decisions remain ethical and unbiased.
Outside the Foundation, I am a Registered General Securities Principal of FINRA, specializing in high risk money movement suitability review for an independent broker/dealer. A registered principal refers to a licensed securities dealers who is empowered to oversee operational, compliance, trading and sales personnel of a broker/dealer or other similar financial services corporation.
I hold a Master's of Science in Financial Investments, and I am currently pursuing a Master’s of Science in Accounting & Finance. I look to turn my career toward enterprise risk management, to obtain a better specialty in overview risk mitigation, compared to my current role of transactional risk management.
Why I joined the MMFC:
I was first introduced to MoyaMoya after my wife’s cousin was diagnosed with the disease years ago. Sam Houle, who is the inspiration of the MMFC, has been close with my wife for her entire life. When my wife asked for us to start a Foundation for MoyaMoya, as there was not a single entity in the U.S. that focused on this disease, and seeing how much Sam’s recovery had impacted her life as well, I knew it was something that needed to be done.
The idea started with running a fundraiser for MoyaMoya in 2019/2020, using the Stroke Association as the charity of choice. After further discussion, and crazy aspirations, we brought up the idea of creating the Foundation, to the now Board President and his family, so that our fundraiser would focus 100% on MoyaMoya and not be a shadow to Stroke.
Since then, the more I work with the MMFC, the more I learn about the disease and the limitations of professional tools available to deter this disease. My hope for this Foundation is that it will act as a catalyst for MoyaMoya awareness around the country and bring peace-of-mind to all seeking a place to go for help and comfort.
My name is Jill Kennedy and I am the Board Secretary and Co-Head of the Advocacy, Events & Volunteer Committee. As Secretary, I am responsible for keeping accurate documentation of the board meetings and minutes. As Co-Head of the Advocacy, Events & Volunteer Committee, I handle a great deal of the Foundation’s exposure to the MoyaMoya community and medical professionals.
I have been at the Connecticut Department of Public Health for 26 years. Currently, I work as a Health Program Associate within the Healthcare Quality and Safety Branch. This Branch is responsible for the employees that license, investigate healthcare facilities, healthcare practitioners, and the Office of Emergency Medical Services. My job duties include revising the outdated regulations that govern both healthcare facilities and practitioners and emergency medical services along with special projects for the Branch Chief.
From 2008 to 2019, I was the legislative liaison for the Department. This consisted of working with the Legislators, Governor’s Office, Office of Policy and Management and sister state agencies to move the Department’s legislative agenda forward during the legislative session. This position gave me extensive experience on writing a legislative proposal and moving it through the process to change an existing law or enact a new law. I also sat on and acted as Chair, Co-Chair and Secretary for several different Boards and Committees over years as a representative of the Commissioner, Governor’s Office, and Office of Policy and Management. Lastly, on a part-time basis, I was the recording secretary for the Town of Vernon’s Town Council for 8 years.
In my personal life, I have extensive experience in being a healthcare advocate for family members. This includes my parents, sister and late husband. My dad has been diagnosed with Alzheimer’s and with my mom is getting older, I’ve been working to ensure both of their healthcare needs are being met. I also have a developmentally disabled sister who is in a group living arrangement. I participate in all her doctor’s appointments, ensure the entity that handles her finances are doing so appropriately, ensure her needs are being met on a day to day basis and attend meetings with the entity running her program. I had to advocate for my husband as he went through treatment for cancer twice cancer and a bone marrow transplant. Ultimately, he passed away in 2011 from complications with the bone marrow transplant.
Why I joined the MMFC:
I was honored when asked to be a Board Director of the MoyaMoya Foundation and gladly said yes. My interest had to do with the inspiration of the Board’s creation, Samantha Houle who is like a daughter to me. I was with her mom the first time she received the phone call where Sam was mistakenly diagnosed with Bell’s palsy. The next thing I knew I was receiving a phone call that Sam had a stroke. When Sam was diagnosed with moyamoya, while conducting research about moyamoya, there wasn’t a lot of information on the internet. I also tried to reach out to hospitals in Connecticut so that her parents could bring her closer, they said that she was in the best place for her recovery. It was at that time; I knew that advocacy and awareness of this disease needed to begin right away. I’m hoping that the Foundation can make a small difference in supporting families and patients who must be far away from home and their support systems so the patients can get the best treatment for their disease. I’m also hoping that the Foundation grow to include members of the medical and patient advocacy community that can help us make a bigger difference in patient’s lives.
My name is Kayla Stetson and I am a Board Director for MoyaMoya Foundation Co. As a director, my responsibilities are to work together to raise awareness to the public about this Foundation and its missions, including bring forth ideas that will help make them possible.
I hold a Bachelor of Arts Degree, in which I studied Communication Science and Disorders. With this education, I started my career as a Speech-Language Pathologist Assistant. During the day I spend a lot of time with children who have a variety of needs. Some who need help with pragmatics (how to socially interact with others), articulation (production of speech sounds), receptive (input: understanding of both words and gestures) and expressive language (output: how one expresses their wants and needs), as well as auditory processing (the way the brain processes auditory information). In which, I found out later that these skills can be lost (with a range of severity) when someone is diagnosed with MoyaMoya.
Why I joined the MMFC:
During my college studies I learned how strokes can affect people in different ways, but I was not aware of all the diseases that can cause strokes. In late 2016, I met Samantha Houle through her cousin, one of my good friends. From the day I met Samantha I could tell she was strong-willed and fearless. I soon learned that she had a rare disease called MoyaMoya; something I knew nothing about, nor ever heard of.
As time went on, we had open conversations about what MoyaMoya was and what she had gone/ is going through. After one of Samantha’s surgeries she had mentioned that she was going to need speech therapy. I would ask her what she had done at therapy and she was always very open to share with me. Samantha really opened my eyes to a different aspect of speech therapy.
Over time, I was amazed by how much her speech had improved in such a short amount of time. Forming that friendship with her encouraged me to learn more about MoyaMoya so that I could support her as well as the MoyaMoya community. Ever since then I’ve been a part of her journey as a friend and now as board member of the foundation.
Hello! My name is Lisa Deck, and I am a Member of the Board of Directors and co-chair of the Moyamoya Foundation Advocacy, Event and Volunteers Committee.
My purpose is to support, lead and advise the Moyamoya Foundation in its’ mission, programs and goals. As a member of the MFC Advocacy, Event and Volunteers Committee Co-chair, I share responsibility for all advocacy, event planning and volunteer retention functions of the foundation.
Outside the Foundation, I am a Founder & Director of Sisters@Heart foundation, a former Go Red for Women National Spokeswomen for the American Heart Association, host and producer of The World of Rare Disease cable show, and an Advocacy Board Member for the American Heart Association in Boston and Southern New England. I also serve as a Global Ambassador, sharing my personal health experience and patient expertise internationally. Personally, I am a wife and mom of two children and an active volunteer in my children’s schools and activities.
Why I joined the MMFC:
I am a four time stroke survivor who was diagnosed with Moyamoya Disease after an eighteen year diagnostic odyssey. It wasn’t until 2015 that I was correctly diagnosed with this rare disease. I underwent two brain bypass surgery to restore blood flow to my brain. After the challenging road to recovery, I wanted to help other patients battling this disease.
Personally, I think awareness, advocacy and contributing to research are the best ways to achieve this goal. When I learned of the Moyamoya Foundation, I knew this was a perfect avenue to help achieve these goals for the Moyamoya Community. I’m proud to be a part of this organization that selflessly and professionally aims to help others.
Victoria Warren, cousin to the foundation’s inspiration, Samantha Houle, started this foundation out of love and care for her cousin. Seeing firsthand the disturbing effects of what MoyaMoya had done to her cousin, the desire to bring awareness to this disease, hoping to bring solace to the MoyaMoya community, became intoxicating.
Victoria lives in Connecticut with her college sweetheart, Wes and blessed with her two-year old son, Russell. Having started her own business at the early age of twenty (20), Victoria had the mindset and drive an entrepreneur needed to start something as grand as a new charity.
In December 2018, what started out as a simple fundraiser, grew into the start of what we now call the MoyaMoya Foundation Co. Due to the lack of awareness to MoyaMoya, and the closest alternative charity being focused on strokes, Victoria did not want Samantha’s legacy to be nothing but another statistic in an already long line of stroke patients.
Since the incorporation, Victoria spent her first year as President, battling the ups and downs of starting a new business. Through the creation of a six person board, Victoria presented leadership and direction, in order to grow the presence and reputation of the foundation in the MoyaMoya community.
In January 2020, Victoria resigned from the board of directors, in order to focus on her business and family. Four months after the successorship of Dean Houle, Victoria rejoined the foundation as a non-voting member of the Advocacy Committee – Events.
Moyamoya Foundation Co is a qualified 501(c)(3) charitable non-profit foundation.
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