Updated: Oct 21, 2019
November 9, 2019 will be a time of celebration, but also a time to shed a few tears. Founded by James Valvano, it was the organization that never wanted to exist but was destined to become the premier international multimedia advocacy organization for Huntington's disease and Juvenile Huntington's disease with a reach of almost 28,000 people, which is only slightly surpassed by the HDSA.
The original intent of the organization was to film a documentary, "The Huntington's Disease Project: Removing the Mask," but quickly became a charity aimed toward helping families affected by Huntington's Disease and Juvenile Huntington's Disease by creating an assistance fund that has helped many families in crisis over the years. It also donated thousands of dollars to research reflecting on the desperation of the HD community to find a treatment or a cure for this terrible disease. Eventually, a sequel to Removing the Mask was released, entitled "The Purple Road" focusing entirely on Juvenile Huntington's Disease, winning a multitude of awards from around the globe. The organization gradually moved from being solely in the United States to operating in Canada, The United Kingdom, Germany and Mexico and became an international movement.
But what was truly unique about WeHaveAFace was its gutsy way of removing the taboos and saying what needed to be said, even if it affected its bottom line. This attitude was best reflected in its radio show "WeHaveAVoice Radio" and also in its online publication WeHaveAFace Global Times. Sometimes controversial but always honest we continue to talk about what you want to hear; not just a group of talking heads giving opinions but rather telling the truth, whether it hurt or not.
One last thing worth mentioning is inclusivity. WeHaveAFace is the most inclusive organization in the HD community. If you want to be involved, just say the word and it's up to you.
So yes, there is lots to celebrate but also tears must be shed as we reminisce about the people who have come and gone and those who have passed. We cannot dwell on those sad times but we cannot ever forget which is why whenever we embark on a new project or fundraiser you can always hear me saying as a rally cry, "lets cure this bitch of a disease!"
So now our organization meets at Lake Mary, Florida for its fourth annual convention and its tenth anniversary. This year is a difficult one, with many not able to attend due to health issues. Yes, HD affects us as well, but those people will be there in heart and spirit. Registration for the convention is now closed so this year if you were unable to attend we ask that you donate $10 through our website to help with our fight, not just for HD but also to help us continue as an organization. Our fundraising goal for this campaign is $5,000.00 and it would be wonderful if we could announce the realization of that goal by November 9, Donations may be made by credit card, PayPal, or you can send a cheque to the address provided in the link. Ask yourself if the world is a better place because of WeHaveAFace.
I believe it is...