From grassroots to soaring branches: becomes a nonprofit

What happened to make seek status as a 501(c)(3) nonprofit organization?

Thank you again for interviewing me Sarah!  That is a fantastic question, and we are so very excited that we took this next step in our mission.  Since I’ve updated the website and announced that will soon be a fully-fledge 501(c)(3) nonprofit organization, the community response has been so loving and warm!  Rather than getting into a very long rant as to why this decision was made, I just recently uploaded an audio clip on the SoundCloud channel.  Someone sent me a Facebook message asking me a very “similar” question.  I did my best to explain the reasoning behind our decision.  Here is the SoundCloud audio link:

Is there room for another HD support organization? What gaps are not being filled or needs not being served?

Without a doubt, there is plenty of room for dozens to exist.  It is my philosophy the more organizations created to bring about awareness of Huntington’s disease on an international scale, the better!  Since I came online in 2009, I’ve realized that there is so much work to be done.  In my opinion, we are far from achieving what I consider to be “the” major hurdle – public knowledge of this treacherous disease.  We must do everything possible to stop preaching to the choir, and raise the bar to focus our energy towards educating the general public.  In my opinion, that is where many have failed, and so much time has been lost.

Do you expect that your organization will be helpful for families faced with HD?

Honestly, all organizations can do is try their best to enrich and educate the lives of our peers in the Huntington’s community, as well making it a top priority to engage the general public.  As you can see from the programs we will be rolling out, our aim is to utilize as many technological tools to advocate for our peers.  I am a Huntington’s disease patient, lost my father from this monstrous disease, and watch daily as my brother is ravaged by this devil.  No [one] organization can dare state that they will be able to help thousands of families financially, however what an organization should do is try their hardest!  I personally know how it is to lose a home, and have to move in with my mother at age 43.  I know how much a social security check can help per month – not much at all! will do everything we can to help our peers across a variety of needs and concerns.  This, you can hold me to.

Describe the experience that you and Ian had which led to learning about non-profits.

Back in 1989 my first job was while I was attending Saint Johns University in New York.  I worked with individuals with disabilities via the nonprofit organization, Catholic Charities.  I became a Residential Counselor (based within one of their group homes), and took advantage of every opportunity that would further provide me with education as to how nonprofit organizations run.  I worked alongside some amazing medical professionals, and soon became (AMAP) certified to administer medications to patients.  Sadly, I did not finish college; I was on the brink of obtaining my degree.  Looking back I only wish I knew then, what I know now.  The emotional and psychological symptoms of Huntington’s disease began to cause me quite a bit of social anxiety and depression.

I decided to move to Florida and soon after, I met Ian.  Ian worked as an Adult Protective Investigator for the Department of Children and Families, and I joined the local ARC (Association for Retarded Citizens) nonprofit organization; I was a Program Director for 50+ patients with varying disabilities.  Ian served on the (ARC) Board of Directors and we wrote many grants to garner funding based on the needs of the patients.  We started the first Supported Employment Program in our county, which gave individuals with disabilities the right to work in various businesses in the community.  Community inclusion was paramount in our daily efforts to push for community acceptance for those who suffered with disabilities – emotionally, mentally, physically, and psychologically.  This program was an absolute success here in Osceola County. I went on to obtain my (ABA) Applied Behavior Analysis certification, and worked for another nonprofit agency in Orlando.  Ian soon joined me, and we both worked for the same organization.  Much of our professional careers were in nonprofit management and service to people with disabilities.   Since my diagnosis in 2009, the irony had hit me quite hard in the beginning.  I became a “monster” after my diagnosis.  I lost sight of everything important in my life.  I spent time on my “pity-pot” and dwelt on the rationale that I am an individual with a terminal disease, who in the future will be in need of the same care I had provided for so many in the past.  Reality hit me hard, and after three long months of sitting on the “pity-pot,” I finally flushed the bowl and decided to use my skills to make a difference for my Huntington’s peers.

Serving those in need was by far the most rewarding service positions we have ever held.  As many will learn in the future, many of my family members aligned themselves within the same profession and will play vital roles in the development and management of our nonprofit.  All of us at look forward to using our past experiences for the endeavors of  It is also important to note that the entire team of will be built on a volunteer, unpaid platform.  I look forward to providing the community with additional information in the very near future!


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