For ten years, WeHaveAFace has set the bar as the only unpaid, volunteer-only, 501(c)(3) nonprofit organization for Huntington’s disease to date. That was the mission then, and it will remain in stone. In 2019, WeHaveAFace grew to be the second-largest presence across Facebook and the most significant presence across all other social media platforms for Huntington’s and Juvenile Huntington’s disease. We are so very proud of this milestone, and we sincerely thank the international Huntington’s and Juvenile Huntington’s disease community for their love and ongoing support.
WeHaveAFace USA had a very successful 2019, and our programs and resources have continued to help our patients and families on a global scale.
The Purple Road Documentary
WeHaveAFace produced two award-winning documentaries that opened the floodgates of knowledge for HD and JHD in more than twenty-five countries. Each of the documentaries was extremely difficult to film and produce due to the subject matter we encompassed. When we released The Purple Road, our mission was straightforward - to tell the truth about Juvenile Huntington's disease. We had to deliver a comprehensive realism of what this disease is and what it does to patients and families. WeHaveAFace was the organization that stepped up to the plate to deliver two films, and brought to the global stage what many were afraid to face for decades. It was a struggle, but looking back, we removed the dark blanket that covered so many for far too long. In 2019, WHAF was able to complete educational viewings of our 2nd award-winning documentary – The Purple Road.
The Mainstream International Film Festival Circuit:
45 “Selections”
6 Best Director Awards
25 Best Documentary Awards
5 Best Feature Film Awards
These achievements humbled us, however the biggest reward was knowing that hundreds of thousands across the globe are now aware of this disease.
If you haven’t already viewed The Purple Road, please follow the link below:
*The documentary has been remastered and shortened for viewing.
*100% of proceeds via On-Demand viewings and hard copy (DVD/Blu-ray), are allocated to our Educational Program Suite.
*We thank TEVA Global for their financial support with these endeavors.
Climbing for Huntington’s and Juvenile Huntington’s Disease
In 2019, Founder of WHAF (James Valvano), and former President of WHAF England and Wales (Daniel Heath), conquered three mountains (Three Peaks Challenge – England, Wales, and Scotland), in the pursuit to broaden awareness of this disease. Personally, I wanted to show my community that you can make a difference – big or small. We invite you to view our advocacy adventures by visiting the links below.
Scafell Pike: https://vimeo.com/295791101
Snowdon: https://vimeo.com/331264841
Ben Nevis: https://vimeo.com/356022404
Throughout these climbs, we educated hundreds of community members within the regions (Scotland, England, and Wales). Educational materials about Huntington’s and Juvenile Huntington’s disease were provided to local communities to broaden awareness. We must never forget the importance of educating the general public at each of our events and outings.
*We thank uniQure for their support for these educational outings.
WeHaveAFace Mobile Application
In 2019, our WeHaveAFace international mobile application hit a record high – 100,000+ active users. The WHAF mobile App was reformatted in 2017 and continued to grow into the most widely used mobile resource for HD and JHD education, information, and resources. WHAF will continue to provide “on the go” technological supports for our global community.
For more information, and to download the free mobile application, visit:
*Available in both Apple and Android markets.
*We thank TEVA USA for their support for our Educational Program Suite.
WHAF 2019 Annual Convention
On November 9, 2019, WHAF USA celebrated its tenth anniversary and 4th annual convention here in Orlando, Florida. This event was a success, and we were blessed to have Dr. Herwig Lange (WHAF Global HUBS Senior Medical Advisor) attend, and run, the day program with our amazing medical professionals who attended. WHAF wishes to thank Sonia Slevinski (University of Iowa), Emily Machiela, Ph.D. (University of Central Florida), Edith Pfister, Ph.D. (University of Massachusetts), Jimmy Pollard (CHDI), and Jane Paulsen, Ph.D. (University of Iowa), for attending and presenting at our 10th anniversary. We also look forward to having each of these amazing individuals join Kevin Jess on future WeHaveAVoice Radio shows to discuss their important contributions for our international HD/JHD community.
*We thank TEVA USA for their financial support for this educational event.
HD3 Accredited Training Program
In 2019, our HD3 Training Program surpassed our long-term objectives – over 300 medical professionals received three CPD’s (Continued Professional Development) points, following successful course completion. WHAF England and Wales, President, Carol Kennedy, and Vice President, Steve Kennedy, will continue this educational platform in 2020. We are proud to say that HD3 Training is the only grassroots, accredited training program for HD and JHD in the region.
*The HD3 website will be updated in the upcoming weeks with additional information.
*We thank TEVA USA for their support for our Educational Program Suite.
WeHaveAVoice Radio
In 2019, WeHaveAVoice Radio grew into one of the most listened to radio programs for HD/JHD. The radio show is now broadcast across iHeartRadio and many other top-tier media platforms. As of January 2020, I am proud to announce that WeHaveAFace has independent ownership and operation of WeHaveAVoice Radio via private funding.
*WHAF thanks Mrs. Hella Lange of Germany for her generous donation.
*Visit: www.WeHaveAFace.org/Radio for more information about our radio show.
WeHaveAFace Global Times
Since 2017, our WeHaveAFace Global Times online newspaper has grown significantly. Following platform updates and upgrades, the online resource has been able to provide articles covering many topics about HD and JHD. We were able to assist Roche, TEVA, and UniQure in their endeavors to broaden awareness of their therapeutic approaches for potential treatments. WHAF is also pleased to have supported the HSG (Huntington Study Group) in their attempts to increase awareness of studies and trials – globally. WHAF has been a supporter of the HSG since 2009. WeHaveAFace Global HUBS has harnessed all social media platforms to share press releases, articles, and informational resources for each of these organizations, on a global scale.
For more information, please visit the following link:
*We thank TEVA USA for their support for our Educational Program Suite.
Transparency
In 2019, WeHaveAFace USA continued to receive “GuideStar Platinum Status” (last five years), for 100% transparency as a legal, 501(c)3, nonprofit organization. WeHaveAFace believes it is imperative to maintain transparency across all avenues of our business.
WeHaveAFace.org invites you to visit our website to review our additional programs and services. Our complete financial report will be available via our website in the upcoming months.
Looking Towards 2020
WHAF USA is proud to announce that WeHaveAFace Canada will be launching the HD3 Training Program in the upcoming months. Vice President (WHAF Canada), Kevin Jess, is working diligently with Dr. Susan Potter. Dr. Potter has her Ph.D. in psychology and is a professor at Acadia University in Wolfville, Nova Scotia. Dr. Potter has studied clinical psychology at McGill University in Montreal, Canada. Susan lives in Kingsport, Nova Scotia, and has known Kevin Jess for over a decade. Both teams – WHAF Canada, and England and Wales, will combine their knowledge and efforts to further this educational platform in 2020.
The Fight to Receive...The Fight to Give.
In 2019, WeHaveAFace faced some hardships with fundraising. As with most grassroots organizations, challenges happen along the way. Although we were not able to continue our Huntington’s Disease Assistance Fund in 2019, we recently corresponded with TEVA Pharmaceuticals (TEVA Brand Managers) regarding their willingness to support such programs as our Huntington's Disease Assistance Fund, in 2020. A policy change took place within the TEVA Branding Sector in 2019; however, WHAF was unaware of the change. Nonetheless, we are pleased to announce this news, and we will provide the community with additional information in the upcoming weeks.
In 2018-2019, WeHaveAFace was working closely with Roche (Switzerland) to provide their company with another avenue of support for broadening awareness and scope of their potential therapeutics. Although WHAF USA did not receive the promissory financial support via educational grants from Roche in 2019, WHAF has reached out to Roche, and we look forward to reporting that they will support our educational programs in 2020. We will keep the community updated as we await a response from Roche.
We thank uniQure for their educational grants in 2019, and we look forward to continuing to support the forward momentum of their AMT-130 for Huntington’s Disease. WHAF USA looks forward to having uniQure support our educational platforms in 2020.
WHAF USA has also been in contact with TEVA Pharmaceuticals (USA) regarding educational grants to support our program platforms in 2020. Currently, we are waiting to hear from TEVA USA to submit grant applications.
The Time Is Now!
WeHaveAFace Global HUBS continues to underscore the fact that patients and caregivers run our organizations - USA, Mexico, Canada, England and Wales, and Germany. We are in the trenches alongside our Huntington's and Juvenile Huntington's patients and caregivers. Without vital supports from uniQure, Roche, and TEVA, WeHaveAFace cannot provide our international community with education, information, and resources. For the last ten years, WHAF has grown to know and love our global community, and we have faith that we shall continue to provide programs and services in 2020.
As we move into 2020, stay tuned for additional information via WeHaveAVoice radio shows.
Always remember, #YouAreLoved