Q & A with James Valvano from WeHaveAFace.org


Q: What’s the single most exciting thing that’s emerging from WeHaveAFace.org?

A: The past year has been amazing!  After finishing the documentary on June 20, 2015, I began entering it into many film festivals.  We knew this process was going to be “nail-biting” but we entered the film and waited.  As certain festivals began replying, we realized that our efforts panned out!  We won for Best Feature Documentary in the Miami International Film Festival, and so many more were still pending.  We have until February 2016 to hear back from the last few.

More info: www.wehaveaface.org/documentaryinformation

As many were aware, we decided to apply for our 501(c)(3) on July 16, 2015.  It was a tedious process to say the least…and an expensive process.  I received a letter from the IRS a few weeks later stating that it would take at least 180 days to hear a response.  Then on September 8, 2015 a letter came in the mail.  I had just come in from having a wisdom tooth pulled, and there I stood with an IRS letter in hand.  Being ravaged by Novocain, and unable to speak, I opened the letter.  It was our Letter of Determination!  Under the spell of Novocain I did my best to communicate the good news to my family.  In other words, like a Neanderthal, I loudly babbled and yelled as I waved the letter in the air!  That day was the day we realized that our desire to help our community was in our hands!

Q: Can you summarize the ongoing programs  that have WeHaveAFace.org has implemented?

A: Now that WeHaveAFace.org Inc. is a fully-fledged 501(c)(3) nonprofit, we have so many programs in our sights.  Before we launch our programs: The Huntington’s Disease Assistance Fund, The Research Assistance Fund, Radio Show, and so much more, we will be holding fundraising events.  We are lining up some wonderful supporters for our 1st annual walk for Huntington’s and Juvenile Huntington’s disease on December 5, 2015.  We will also be launching the “WeHaveAFace.org Inc. Store” very soon, where 100% of net proceeds will fund “The Huntington’s Disease Assistance Fund.”

More info: http://www.wehaveaface.org/events

Q: What are some things, events, and dates to look forward to?

A: Our first walk for Huntington’s disease will be taking place on December 5, 2015 right here in sunny Saint Cloud.  We chose the Saint Cloud Lakefront because it is a beautiful place to visit.  A portion of the documentary was filmed there, and it’s always been one of my favorite places.  We are also very excited about this day because it is Saint Cloud’s annual Christmas Parade.  It will be a great day to meet our community and spread awareness of Huntington’s disease!  100% proceeds of donations received for this event are allocated for the production and distribution of the documentary to educational institutions and other venues.

More Info: www.WeHaveAFace.org/Walk4HDJHD

WeHaveAFace.org Inc. is the new Charter Organization Representative for the Harmony Cub Scouts (Pack 888).  This is a wonderful opportunity to help our youth and educate them about Huntington’s and Juvenile Huntington’s disease.  As we all know, The Scouts of America are vital citizens in our society.  Stay tuned for more information about what we have planned!

We are now in our 3rd T-Shirt campaign and it is going well!  We understand that many cannot afford to buy a shirt, however their support via sharing the campaign is so important!  The campaign will most probably be extended for another month to allow community members time to purchase theirs.

More info: www.booster.com/wehaveaface-incorporated2

In January 2016, we plan to have a huge golf tournament in Jacksonville, Florida.  We do not have a date set; however we are in the process of panning out the details.   We will continue to roll out fundraising events to ensure that our programs are funded.

WeHaveAFace.org Inc. will be announcing news about our 1st annual convention, which will be planned for sometime in March 2016.  Stay tuned!

Q: How is WeHaveAFace helping people with HD on a daily basis?

A: WeHaveAFace.org Inc. began as a grassroots effort.  With the help and support of over 50 Regional Advocates, we have created an online safety net for our international community.  Currently, we have ten Facebook groups (most are private), to help our peers with support:  Doctors 4 HD, Recipes for HD/JHD, Needs Exchange, and HD Caregivers, to name a few.  Each day new members join these groups and share their personal experiences and provide advice.  Many of our Regional Advocates hold Skype calls / phone calls with peers to provide a more personal support experience. We have harnessed social networking across the board.  The international mobile application has over 25,000 active users who can access information and resources at their fingertips.  As we grow, our aim is to create support groups located across the nation.  There are many supports coming down the road, and it is within our mission to follow through with our platform of programs.  The community can visit our website and view our suite of programs.

Support Groups: http://www.wehaveaface.org/#!supportgroups/c1ghc

To become a Regional Advocate: www.WeHaveAFace.org/TheRegionalAdvocates

Q: Any final thoughts?

A: Looking back to where we were in 2009 – 2011, I am so thankful to the thousands of supporters for WeHaveAFace.  It was with the ongoing love and support of our international peers that we have come this far.  In the near future I will be announcing when (and how) our international community can view the documentary – “The Huntington’s Disease Project: Removing the Mask”.  We have a few months left until the film festivals end, and we are looking forward to finally having our Huntington’s community view it.  Until then my friends – You are loved!


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