Since my diagnosis in 2009, Huntington's disease brought much despair and grief, but it also allowed me to find an amazing community. Although it is a bittersweet double-edged sword, I would never have had the opportunity to meet so many outstanding and brave people along this path. Looking back, WeHaveAFace was never meant to transform into what it has become. However, things happen for a reason, and for that, I am truly blessed. I remember back in the days when I posted on Facebook - "I have HD, HD doesn't have me!"
I meant it then when I posted it in 2011, and it continues to be the way I live my life. Back then, advocacy was so different...much more tedious. It wasn't easy to try and hold conversations about subject matter, which was considered - taboo. Nonetheless, we moved forward and continued to pursue all truths about Huntington's and Juvenile Huntington's disease. Finally, WHAF was successful, and topics and subject matter never discussed before, finally came to the forefront. I was honored and blessed to have met hundreds of community members over the years. The value and feeling of meeting a fellow advocate are indescribable. Social media has its wonders, but to finally embrace someone in person completes the circle. It changes you...adds more to your soul.
I first began saying, "You are loved" when I produced a series of "James Talk Videos" back in 2010. Honestly, I never planned it, but those words slipped from my lips after the first episode and continued onward. I remember those days! I used to share these videos each week on YouTube. These five-minute "bits" pertained to current studies/trials, events, and any news I could share to help our community. It was also the avenue I took to get the community involved in our first film. What memories! But sadly, those videos no longer exist.
Time surely flies, and in time WHAF grew to be my ten-year-old child. It was an extension of myself and my personal growth. Growing pains come with the territory, but after two successful films, a robust platform of programs, WHAF built HUBS (Huntington's Universal Base Supports). Again, it was never the plan, but it happened. I've never been more proud of my teams in the USA, Canada, Mexico, England and Wales, and Germany. Their dedication and advocacy for our international HD/JHD community make the legacy of WeHaveAFace (my ten-year-old) that much more endearing.
Each of us walks a path in life. Many paths cross; many do not. On the path of life, we find blessings and heartbreak, but that's indefinitely life. Then there comes a time in life when your path brings you to a fork in the road. My path has brought me to that fork after ten years of advocacy. I posted this photo on Facebook back in 2011- "When I reach the end of my road, I will look back with a smile knowing that I was never afraid to be me." I must say that it is the truth. Since the day I began my advocacy mission, I remained true to myself. I've never been anything but unorthodox in the way in which I advocate. That's just me...what I had to offer...all of me. I regret nothing.
The fork in the road allowed me to take a breath, escape, disconnect, and reexamine my life, family, and my future. It has been one of the most amazing experiences in my life to lead WeHaveAFace.org, and I will always treasure every memory. After much soul searching, this year, I will be retiring from WHAF; however, the USA HUB will remain as an online resource for our Huntington's and Juvenile Huntington's disease community. WHAF Canada, Mexico, England and Wales, and Germany will continue their efforts and mission!
I wish to thank the entire HD/JHD community for the years of love and support! Always remember...and never forget - #YouAreLoved
*Stay tuned for a future WeHaveAVoice Radio Show*