WHAF 10 Years in Review Flipbook PDF

WHAF 10 Years in Review Brochure_FINAL

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WeHave We HaveA AFace

Our mission WeHaveAFace aims to broaden global awareness of Huntington’s disease and Juvenile Huntington’s disease. Our success in increasing awareness and education of this disease will continue to be measured by our ability to embrace and utilize various state-of-the-art technologies: international videos, films, radio shows, mobile applications, electronic publications, accredited

day training management, hospice, nursing, hospitals, teaching, training, and technical backgrounds. We have first-hand experience working with individuals with diseases and disabilities. WeHaveAFace is the premier inter national multimedia advocacy organization for Huntington’s disease and Juvenile Huntington’s disease. The Board of Directors, Advisors, and Advocates of each of the

training, social media networking, and WeHaveAFace

WeHaveAFace organizations are unpaid volunteers.

TV. WeHaveAFace will move our mission forward to

The decision to remain as an unpaid, volunteer-only

close gaps in education and services and provide

organization was to ensure that our priorities remain

support to our international Huntington’s community. It

focused on allocating 100% of donations to our

is also paramount that we educate the general public.

Huntington’s and Juvenile Huntington’s community via

We are proud patients, caregivers, and professionals with years of experience in nonprofit and corporate management, group home management,

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education, resources, via our program suite. WeHaveAFace is a legally registered IRS 501(c)(3) nonprofit organization.

WeHaveAFace

WeHave We HaveA AFace

How it all began… a short overview

emotional, and psychological aspects of the disease. Simply, the film was dark and to the point. James Valvano introduced the “silver mask and black cloak”

In late 2008, James Valvano and his family noticed

which symbolized the stigmas which were attached

something different about their brother John. John

to Huntington’s disease for decades. Valvano also

was the last family member to relocate from Queens,

coined “monster” within the film to capture exactly

NY, to Saint Cloud, Florida. Most of the family thought

what this disease is. When the five-minute film was

he had the onset of Parkinson’s disease. After a few

released to the public for online judging, many within

months, John agreed to a battery of tests, however

the Huntington’s and Juvenile Huntington’s disease

the doctors only found that he had a Vitamin B-12

community were taken back by bold step this film

deficiency, and a thyroid issue. Although the family

took.

understood that these medical issues were concerning,

accepted.

At that time, things of this nature were not yet

they pushed for additional testing. In early 2009, John

A f t e r t h re e w e e k s , “ T h e F a c e l e s s F a c e s o f

was diagnosed with Huntington’s Disease. This diagnosis

Huntington’s Disease” had been viewed more than

sent shockwaves across the entire family. Soon after,

600,000 times. The feedback was understandable

James Valvano and his father Joseph Valvano visited their

– many within our community rallied behind the film

Primary Care Physician who prescribed the Huntington’s

because it “hit home” for them on a personal level. On

test via Quest Lab. Both James and his father tested

the other hand, many were not ready to see such a

positive for Huntington’s disease. On August 11,

film depicting the “monster” for what it truly is. The

2012, the Valvano family lost their father, Joseph from

small group of advocates of WeHaveAFace at that time

Huntington’s disease. His passing took place on his

were proud to remove the mask from this disease, and

daughter’s (Christina) birthday. On July 17, 2016, the

we moved forward. Although the five-minute film did

Valvano family lost their brother John from Huntington’s

not win, it was one of the most widely viewed short,

disease. His passing took place on his brother’s (James)

submitted that year.

birthday.

Following the AAN submission, the team debated

In 2009, twelve

our next move. What was our goal? Within weeks,

individuals came

Clarice Miller (President of Deshalamar, a 501(c)

together to advocate

(3) nonprofit organization for Huntington’s disease,

for Huntington’s disease in a very different way. Back

domestic violence, and veterans in NY), reached out

then it was not easy to touch on sensitive subject matter.

to James Valvano. Together both organizations worked

Soon after WeHaveAFace built this group of amazing

towards common goals to assist the HD and JHD

advocates, we saw that the American Academy of

community.

Neurology (AAN) was accepting video/film submissions

After a few months, James Valvano spoke

from all disease-oriented groups. The task was to

with Melissa Biliardi (Founder of Help4HD.org),

create a five-minute film to broaden awareness of a

now Founder, President & CEO at HD Support &

neurological disease All entries would be seen across

Care Network Inc. The common goals each of our

the globe. After a couple of weeks of heavy thought,

organizations shared, brought us to a new level of

James Valvano and his family put together a film

advocacy. Together we built the foundation and

for Huntington’s and Juvenile Huntington’s disease.

structure of Help4HD and WeHaveAFace. Our missions

The short film was called, “The Faceless Faces of

were aligned, and our goals were set in stone.

Huntington’s Disease.” Filmed in black and white, the

Together we pushed the envelope and decided to

short film was visually and substantively impactful.

create our first international film – “The Huntington’s

Without any dialogue, the film showed the physical,

Disease Project: Removing the Mask.”

10 YEARS IN REVIEW

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WeHave We HaveA AFace Through online T-Shirt sales, and a massive fundraising event (via Deshalamar) in Queens, NY, we were able to raise enough funds to produce the film. Although it took a few years to create, together as a team, Help4HD, Deshalamar, and WeHaveAFace, pressed forward. Valvano, Biliardi, Miller, and an amazing team, worked diligently to broaden awareness of all aspects of HD and JHD via Facebook, and brought Help4HD radio to our community. Biliardi and Valvano went on to create “The Huntington’s Post,” an online newspaper, and began writing articles to broaden awareness of our mission. Valvano and Biliardi built each of their websites from the ground up and created a massive global advocacy film challenge. As we began filming, we harnessed all avenues of technology. We knew that so many patients and families across the globe wanted their voices to be heard - their faces to be seen. We asked the global Huntington’s community to stand up and say – “My name is…and I am no longer a faceless face.” WeHaveAFace received hundreds of video testimonies from all corners of the world. Our first full-length documentary was picking up momentum and tens of thousands awaited its release.

View a sample of these incredible video testimonies.

“I remember it as if were yesterday. WeHaveAFace and Help4HD communicated upwards of sixteen hours a day via Skype. We literally built a new way of advocating from the point of view of the patients and caregivers I believe we pioneered a new avenue of advocacy at that time. We did everything we could to utilize every tool we had in our box! We deeply thank Melissa Biliardi and Help4HD for their financial contribution and support in making this film come to fruition.” — James Valvano (Founder WeHaveAFace)

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“Congratulations on your 10 years James! You and your team have created some amazing projects to bring factual, and real awareness to H u n t i n g t o n ’s D i s e a s e a n d Juvenile Huntington’s Disease. I remember when I first saw your work on Facebook, I couldn’t believe how talented you are in so many ways. Then I was privileged to be able to work with you and the team on a couple. Remember A Team? When Help4HD Radio was born, you helped me with that project, and many more after that. You were the catalyst, and creative partner of many Help 4 HD International projects as well. My only regret in all these years is that I have not been able to meet you, and your super beautiful supportive family in person. I look forward to watching WHAF as you roll out the next 10 years. James, YOU are loved!” —Melissa Biliardi Founder Help 4 HD International, Inc. Founder/CEO HD Support & Care Network, Inc. Throughout the production of the film, the team worked tirelessly to move our advocacy mission forward. It was a very enlightening time for all of us. We faced many obstacles, yet overcame each of them. Shortly after the production of the film, WeHaveAFace became an independent organization. On April 20, 2015, WeHaveAFace became a legally registered 501(c)(3) nonprofit charity. Further into 2015, the film had received dozens of film festival awards: Best Film, Best Documentary, Impact Awards, and many others. In 2016, we were finally

WeHaveAFace

WeHave We HaveA AFace able to release the film to the general public. The overwhelming support from our international community was beautiful and utterly heartfelt. WeHaveAFace was able to break through many stigmas, and broaden our message. P l e a s e re a d t h e r e v i e w s a n d t o v i e w t h e documentary.

HSG is an organization of compassionate professionals dedicated to finding treatments that make a difference, providing rigorous care initiatives, and improving the quality of life and outcomes for HD families. How? By bringing together families, medical professionals, clinical researchers, HD advocacy groups, and sponsors to raise awareness

We truly thank Louise Vetter (HDSA, CEO and President) and her team for their educational support. WeHaveAFace and t h e H D S A e n t e re d i n t o a n educational partnership to facilitate national viewing of the documentary throughout their support groups.

HDSA Press Release Our growth was exponential, and we moved our mission forward and kept our promise to our Huntington’s and Juvenile Huntington’s community. We a i m e d t o c re a t e t h e f i r s t o f i t s k i n d documentary, and we succeeded. However, we were not done yet.

Supporting Research: Trials and Studies Along our path o f a d v o c a c y, WeHaveAFace was pleased to engage with the Huntington Study Group (HSG). As per the HSG website: “The Huntington Study Group (HSG), which was formed in 1993, is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.

10 YEARS IN REVIEW

of HD, share knowledge and best practices, and develop innovative treatments.” For years, WeHaveAFace was pleased to assist patients and families with information about trials and studies, and had open communications with representatives within the HSG. At all of our events, we provided the community with pamphlets and resources. We were also pleased to have created many HSG PSA’s, and published articles within the WeHaveAFace Global Times online newspaper. It was imperative that the HSG was included within our WeHaveAFace Magazine, and in our international mobile application It has always been our goal as an international organization to broaden awareness of studies and trials. In this endeavor, we were able to help the HSG fill vital trials and studies.

Learn about the nearest study or trial in your area.

In December 2016, James Valvano was invited to speak at the Stem Cell Summit at the Palm Beach County Convention Center (Fl.) Alongside an amazing

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WeHave We HaveA AFace panel, Leslie M. Thompson (University of California, Irvine), D r. J a n N o l t a (UC Davis), and Frances Saldana (President of HD-Care), James spoke about the challenges Huntington’s families experience on a daily basis, and the urgent need to broaden the scope of science to find a viable treatment or the cure. Valvano spoke to an audience of over four hundred attendees, and introduced the various programs and plans of WeHaveAFace. WeHaveAFace was also highlighted via a televised video for the Stem Cell Summit Platform. WeHaveAFace has always been an advocate for Stem Cell Research, and we truly believe in the amazing work being done at UC Davis Institute for Regenerative Cures. We hope to continue to support the research of Dr. Jan Nolta and Dr. Kyle Fink. Hope does exist!

Dr. Nolta: watch the video tour.

Dr. Fink: watch the video tour.

In June 2016, at the HDSA’s 31st Convention (Baltimore Maryland), James Valvano was awarded with the “Marjory Guthrie” Award. As per the HDSA: “This award recognizes a member of the HD community who has, through their compassionate leadership, improved the lives of all persons living with HD either in their community or nationally.”

James Valvano traveled to Sacramento, California to meet and film Dr. Jan Nolta, and Dr. Kyle Fink. The experience was simply incredible. Dr. Nolta, and Dr. Kyle Fink permitted Valvano to film certain areas within the lab. Along the tour, both doctors gave a detailed description of many machines and scientific equipment the team utilizes in their quest to find a viable treatment or the cure for Juvenile Huntington’s disease.

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WeHave We HaveA AFace “It was always a dream of mine to meet hundreds of patients and caregivers who I’ve advocated alongside for so long. I will never forget the love that came from that convention. I was beyond shocked when Louise Vetter mentioned my name for the Marjory Guthrie award. It was such an honor. I will always treasure that moment!” —James Valvano

WeHaveAFace Magazine

In 2017, an amazing person reached out to WeHaveAFace Joseph D’Onofrio (owner of Delaware Media Group), contacted James Valvano to discuss a project that has never been launched for Huntington’s and Juvenile Huntington’s disease community. During the initial conversation, the project was accepted and we were on a mission to cre“We received amazing ate the WeHaveAFace Magafeedback on the magazine after it zine! The two publications was published. It was were launched in digital fordescribed by our mat, and in hardcopy. The contact at Teva as one of the best programs global HD/JHD community they have ever funded. and the general public I was even told that showed great interest in these WHAF Magazine was publications. The hardcopy of showcased in the hallways of the company the magazine was widely headquarters!” spread by the international —Joe D’Onofrio team throughout the USA, Canada, UK, and Germany. Hundreds of community members completed an online form to receive a copy, and in many cases requests for dozens of copies were also submitted to us. The feedback from our community was incredible, and many delivered both issues to

10 YEARS IN REVIEW

their local medical centers. WeHaveAFace truly thanks the Delaware Media Group for taking a chance on us. The educational project was an instant success! We were so proud to have the support and participation from the following medical professionals: Dr. Herwig Lange (George Huntington Institute of Germany), Dr. Jan Nolta (UC Davis, California), Dr. Peg Nopoulos (University of Iowa), and Carol Kennedy. We also wish to thank those who agreed to be highlighted within the magazine: Help4HD.org, Frances Saldana of HDCare.org, and the HSG (Huntington Study Group).

S i n c e 2 0 1 7, WeHaveAFace has worked closely with local TEVA representatives (south east region). We were blessed to have their support and attendance at almost all of our educational events, fundraisers, and support groups. WeHaveAFace also worked diligently with local TEVA reps to coordinate many community meetings/dinners to broaden awareness of their drug, AUSTEDO to treat the involuntary movements (chorea) of Huntington’s disease in adults. Each of these meetings included dozens of patients and caregivers from Florida. During these gatherings, TEVA reps/nurses and Dr. Rodriguez (Neurologist) attended and addressed the event. At many of these gatherings, WeHaveAFace utilized Skype to facilitate HD/JHD patients and families to attend – virtually. WeHaveAFace was instrumental in working alongside TEVA to educate patients and families about AUSTEDO, for the treatment of chorea.

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WeHave We HaveA AFace In 2017, WeHaveAFace was pleased to provide support, feedback, and p a r t i c i p a t i o n f o r T E VA Amsterdam to create Educational Modules which would benefit HD/JHD patients and families. With the reach of WeHaveAFace on a global scale, we were a b l e t o p ro v i d e m u c h n e e d e d f e e d b a c k f ro m communities across many regions. Along with other HD organizations, and our incredible medical professionals, WeHaveAFace was pleased to be part of this endeavor. We thank Saskia Van Der Hel, and her entire team, for her hard work and dedication.

WeHaveAFace visited our friends at HDCare.org in California. Mary Etta Robertson, and James Valvano attended their OC Marathon. WeHaveAFace was pleased to help film the event and provide attendees with HDCare pamphlets for Huntington’s disease. WeHaveAFace was also pleased to sponsor Daniel Medina (formerly of HDCare.org), for his participation as a runner in this incredible event. HDCare stands for Huntington’s Disease Community Advocacy, Research, and Education. Watch the HDCare-OC Marathon video!

Community Outreach WeHaveAFace is honored and proud to have worked with and e d i t e d H e l p 4 H D ’s J H D D o c u m e n t a r y : “ T h e Wa r r i o r s , Fighting the Incurable Juvenile H u n t i n g t o n ’s D i s e a s e . ” T h i s amazing film has won many awards and has facilitated knowledge and awareness of Juvenile Huntington’s disease. WeHaveAFace has also traveled Help4HD’s - Highly Interactive Participant Education (HIPE), and Medical Symposium events to show support and help in any way we could. Their HIPE program is a beneficial program available for our HD/JHD community. Please visit Help4HD.org for more information.

WeHaveAFace received this amazing Partnership Award from Help4HD.org at their 2017 Symposium. It was an honor to be recognized as one of the founders of Help4HD.org.

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We H a v e A F a c e h a s b e e n friends a n d e d u c a t i o n a l p a r t n e r s w i t h HDCare.org for many years. We truly love and respect Frances Saldana, President of HDCare.org. Frances has been advocating for Huntington’s and Juvenile H u n t i n g t o n ’s d i s e a s e f o r decades As per HDCare.org: “Frances became an advocate for Huntington’s Disease (HD) in 1994. All three of her children inherited HD from their late father. Frances implemented the Huntington’s Disease Society of America (HDSA) Affiliate in Orange County

WeHaveAFace

WeHave We HaveA AFace and advocated successfully for the HD Clinic at UCI. She cofounded HD-CARE in 2012. She currently serves on the UCI Human Stem Cell Oversight Committee. She is an Ambassador for Americans for Cures, who authored Proposition 71. Proposition 71 was passed became known as The California Institute for Regenerative Medicine (CIRM). She has been recognized by the Genetic Policy Institute at The World Stem Cell Summit, the UCI Chancellor Howard Gillman with a Living Our Values award, Volvo Corporation at the Volvo for Life Hometown Heroes awards, and other organizations for her unwavering commitment to promote excellence in care for the HD community. Frances lost her daughter, Marie, to HD in 2009 and her second daughter, Margie in 2014. Her only remaining child, Michael, is fully symptomatic and her two grandchildren are “at risk.” Her mission in life has become to educate the public about HD, support HD research, advocate for the HD community, and to see Huntington’s Disease eradicated in her lifetime.”

Supporting Studies & Trials WeHaveAFace began supporting the Huntington’s Disease Society of America’s HD Trial Finder platform since it was relaunched in 2015. As patients and caregivers, we completely understand how important it is to know where you can find studies and trials for Huntington’s disease. Since our inception, we harnessed a technological approach towards advocacy, and that includes broadening awareness of all studies and trials available for Huntington’s disease. We are proud to be among the HDSA’s Partners in Clinical Trial Education.

...then another film

WeHaveAFace was also invited to attend and present at the 2017 HD-Care Symposium at the University of California, Irvine. James Valvano, Ian V. Torrington, and Daniel Medina were blessed to share the newest technological products - MyID! Medical Alerts to the attendees. With the help and support from HDCare.org, WeHaveAFace was able to provide two hundred medical MyID! wristbands to our HD and JHD patients. We thank the amazing team at HDCare.org for their ongoing love and support for our Huntington’s and Juvenile Huntington’s community. Their dedication and love is a gift.

10 YEARS IN REVIEW

It was time to produce another documentary. WeHaveAFace knew that this film was going to be challenging. We were about to set out on an international mission to broaden awareness of Juvenile Huntington’s disease. Each of us knew that this film would have to reach a global audience and touch the souls and hearts of each viewer. We had to get this right! The international documentary - “The

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WeHave We HaveA AFace Purple Road” was born. The team traveled within the USA, Canada, England and Wales, and Germany. It was imperative to capture all aspects of JHD; we needed to have international perspectives of Juvenile Huntington’s disease. After receiving over forty film festival awards: Best Documentary, Best Feature Film, Best Director, Best Cinematography, Best Impact, (and many more), we released the film On-Demand for the general public to view. The film premiered in Canada, Mexico, England and Wales, and Germany. We are deeply grateful that “The Purple Road” was received brilliantly across the globe. WeHaveAFace also wishes to thank each of the JHD patients and families for their contribution within the film. We wish to thank the HDA (Huntington’s Disease A s s o c i a t i o n o f E n g l a n d ) , a n d P a r a m j i t O b e ro i (Sheenam’s Wish) for their support within The Purple Road documentary. As of 2020, tens of thousands have viewed each of these films. We are so pleased to help broaden awareness of HD and JHD. WeHaveAFace is proud to report that our two films have won more awards than any other film for our disease-oriented community. Watch the Purple Road

WeHaveAFace the Song Written by James Valvano and sung by: Ac. Jr & Brady James J a m e s Va l v a n o wrote “WeHaveAFace” in 2009, and his cousin Brady Novak has used his amazing voice to sing the song. The song is the soundtrack for the award-winning Juvenile Huntington’s disease film The Purple Road.

The Growth of WeHaveAFace Suite of Programs Through in-person conversations, support group meetings, and online surveys, the feedback from our H D / J H D community brought us to create our HD3 training program. All of us at WeHaveAFace have decades of experience working in group homes, nursing homes, hospice, day-training facilities, and hospitals. We have first-hand experience working with individuals with diseases and disabilities. This robust, interactive, multimedia-based training is an accredited program via Skills for Care. Each individual who completes the three-hour course received 3 CPD points. We thank Carol Kennedy (WHAF Global HUBS-(RGN, RDSA, RM, IV.), and President of WHAF England and Wales, for launching this successful training in the UK! As of 2020, WHAF has provided this accredited training to hundreds of medical professionals. WeHaveAFace looks forward to offering HD3 in Canada and in the USA in 2021.

Skills for Care is the strategic body for workforce development in adult social care in England. Skills for Care is an independent registered charity working with 21,500 adult social care employers in England to set the standards and qualifications for social care workers.

You can get the verbiage and link to download the song here

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WeHaveAFace

WeHave We HaveA AFace

MyID! Medical Alerts! It was never our decision to reinvent the wheel regarding being proactive to provide a safety mechanism for our H u n t i n g t o n ’s a n d Juvenile Huntington’s patients and caregivers. Thousands of our patients have experienced encounters with law enforcement, EMS, and Fire Rescue. Many experiences are not positive, leaving the HD/JHD patient in a very precarious and desperate situation. In 2017, Daniel Medina (Vice President of WeHaveAFace) brought this product to the WeHaveAFace team. Instantly, we realized that this product was about to change the way in which safety, security, and response would transform. These products are the most technologically advanced tools on the market. Although ID cards,

and wallets print-outs are beneficial, the MyID! products make it easy, safe, and quick to provide up-to-date medical information about the patient or caregiver. The mobile application makes it easy for all users to update their information on-the-fly, and share it with loved ones and medical professionals. All of our our law enforcement, EMS, and Fire Rescue workers recognize the “Star of Life” symbol. These bracelets allow our community workers and citizens to quickly turn over the wristband to find two ways to acquire vital information. On each of these bracelets you will find a bar code and an 800#. Any smart phone has the capability to scan the bar code to instantly obtain all necessary medical information about the patient. As a safety-net, anyone can call the 800# on the wristband and the representative who answers the call will be able to provide the same medical information about the specific patient. WeHaveAFace has an exclusive partnership with MyID! and for each wristband that is

WeHaveAVoice Radio!

WeHaveAFace understands the need to discuss sensitive subject matter and topics pertaining to Huntington’s and Juvenile Huntington’s disease. It is our responsibility to “push the envelope” by hosting shows with sensitive topics such as suicide, sexuality/sexual promiscuity, alcoholism, aggression, behaviors, and so much more. We must continue to openly talk about all aspects of this disease. WeHaveAVoice Radio is the most widely broadcasted show for H u n t i n g t o n ’s a n d J u v e n i l e Huntington’s disease. Our aim for 2020 and beyond is to host radio shows in Spanish and German. We thank our Senior Medical Advisor, Dr. Herwig Lange of the George Huntington Institute (Germany) for his ongoing support during many shows. Click here to listen to WeHaveAVoice Radio

10 YEARS IN REVIEW

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WeHave We HaveA AFace purchased, in turn, we use the credits to purchase wristbands for those who are unable to afford their own.

What’s on the international mobile application? • Education - Information - Resources! • WeHaveAVoice Radio! • WeHaveAFace Downloadable Documents! • HDSA - HD Trial Finder • The Unity Project: Global list of HD/JHD organizations • HDBuzz Articles • PLOS - Downloadable Algorithms documents for your doctors! • Educational Partnering HD/JHD Organizations! • Online Support Groups

Please visit our MyID! page to see how these amazing products work! Click here for video.

WeHaveAFace International Mobile App! Since the 2016 update of our WeHaveAFace International Mobile App., we have over 100,000 active users globally! WeHaveAFace is the premier multimedia advocacy organization for Huntington’s and Juvenile Huntington’s Disease, and we consistently “push” vital information to the mobile application for an “on the go” approach for education, information, and resources. WeHaveAFace believes it is imperative that our Huntington’s and Juvenile Huntington’s patients and families receive as many resources as possible. If you have an additional resource you wish for us to list, please email us directly through the app!

• MyID! Medical Alerts! • HD/JHD Organizations - *Contact us to be added to the mobile App! • HD Bloggers - *Are you a Blogger for HD/JHD? Contact us and we will add your Blog! • WeHaveAFace SHOP! Please feel free to download the free mobile App!

“WeHaveAFace” App is owned and operated by WeHaveAFace Copyright - 2017 - 2020. Registered via Android and iOS markets.

WeHaveAFace Global Times!

In 2017, WeHaveAFace launched the international “WeHaveAFace Global Times” online newspaper. The publication provides many vital resources for our community and the general public. We are pleased to announce that since its

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launch,

the

WeHaveAFace

WeHave We HaveA AFace WeHaveAFace Global Times is the most widely read online newspaper for this disease oriented group. Currently, we have eight amazing writers within the Huntington’s disease community and we look forward to broadening this platform in 2020 and beyond. WeHaveAFace Global Times online publication includes: • Current research • Studies and trials: Roche, uniQure, UC Davis and more • “Dear Doctor” - Patients and caregivers provide questions for our medical professionals • News and insight from our partnering Huntington’s organizations • Articles from HD/JHD doctors and researchers • Articles from the HD/JHD community • Unity Project: International links to all HD/JHD organizations • Video and audio clips regarding HD/JHD We are blessed to have the following contributing writers: Kevin Jess, Leanne Delong, Cindy Moore, James Valvano, Jennifer Almeida, Deborah Johnston, and Candice M. Neblett. We look forward to having additional contributing writers join us in 2020 and beyond. Please feel free to visit the publication and read our articles. · V i d e o a n d a u d i o c l i p

WeHaveAFace Telemedicine Since 2017, WeHaveAFace and Dr. Herwig Lange of the George Huntington Institute of Ger many have been providing telemedicine platforms. We are pleased to offer Coliquio Medflex, a professional, secure, and robust, telemedicine platform to provide free services to our population. Patients and caregivers can now participate in a one-on-one session from the comfort of their homes. Using a computer, tablet, or cell phone, patients, and caregivers can talk to Dr. Herwig Lange for support, advice, and feedback on the following: treatment, behavior problems, and psychological issues in acute situations. 10 YEARS IN REVIEW

For the last few years, we realized that too many patients were going without the necessary supports to manage HD and JHD. Dr. Lange (Neuropsychiatrist), has been the Senior Medical Advisor for WeHaveAFace since 2016. Dr. Lange’s experience treating patients with Huntington’s and Juvenile Huntington’s disease spans over forty years. We are blessed to have Dr. Lange on our team, and in the trenches with our population. Please feel free to visit our telemedicine page for more information, and to make an appointment to have a telemedicine conference call.

More About Dr. Lange: The George Huntington Institute (GHI) is dedicated to the treatment and research of autosomal-dominant Huntington’s disease. The GHI maintains one of the largest study outpatients worldwide for patients, gene carriers, high-risk individuals and their families. It was developed by Dr. Ralf Reilmann founded in Münster to expand the research and ambulance work he started at the University of Münster. The GHI is active in the work of the European Huntington’s Network (EHDN) and the Huntington Study Group (HSG) involved. Dr. Reilmann is an elected member of the Executive Committee of the EHDN and the HSG and has led several international therapy studies. The GHI team, with the help of Dr. Stefan Bohlen, Dr. Herwig Lange, Selma Belgriri and Anabel Rüsenberg have recruited and supervised > 800 participants in the ENROLL-HD study in the past few years and actively participated in several clinical studies with new drugs and scientific projects. *This free service should be requested when the patient’s medical professional is not available. In crisis situations, always contact your medical professional directly or seek emergency services immediately.* Make an appointment to speak with Dr. Herwig Lange.

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WeHave We HaveA AFace

WeHaveAFace Support Groups!

called Hunting-

Since 2009, WeHaveAFace has provided online support for our comm u n i t y. Crystal Martin Zachary (Director of Regional Advocacy and Co m mu n it y De ve l op m e nt ) , a n d Ki m be r l y Spears, (Director of Patient Advocacy Assistance), began the longest running Facebook groups for Huntington’s disease. Their early advocacy paved an outstanding path of support for our community. Mary Etta Robertson (Director of Patient Advocacy), has provided years of online support via a private caregivers support group. Our history as an organization is based on providing support. In 2020, Jennifer Lynn Almeida (Director of Communications), created a Facebook group

Awareness Group

t o n ’s D i s e a s e Education & w h i c h

h a s

become one of the most proactive groups for our community. WeHaveAFace aimed to remove stigmas which lingered within our community for decades. We are blessed to have these amazing individuals on our team. In 2020, WeHaveAFace relaunched twelve various Facebook support pages. We made the decision to ensure safety and privacy was at the forefront of our updates. In addition, each of these groups pertain to a specific topic or program. WeHaveAFace believes that each of us must adhere to an ethical approach within each of these groups. No individual should be mistreated for his/her opinion and feelings. This is a common sense aspect, and one that WeHaveAFace promises to our group participants. Please feel free to review our groups and decide if you wish to join and participate.

WeHaveAFace Facebook Groups!

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WeHave We HaveA AFace

WeHaveAFace Locations! WeHaveAFace expanded its reach since 2016. We are proud of our accomplishments to have HUBS (Huntington’s Universal Base Supports) in Canada, Mexico, USA, Germany, and England and Wales. Please visit the following locations to view each of the teams. • Team USA • Team Canada • Team Mexico

Led by President, Cindy Moore, and Vice President, Kevin Jess, WHAF Team Canada has become an instrumental asset to our Canadian patients and caregivers. Their fundraising events have raised the bar for community involvement. Team Canada also provided assistance via the Huntington’s Disease Assistance Fund, and have supported the Huntington’s research of Dr. Blair Leavitt of University of British Columbia. Team Canada: WeHaveAFace Canada

WeHaveAFace Mexico

• Team England and Wales • Team Germany

See our locations

WeHaveAFace It was never within the plan or mission, however, WeHaveAFace decided to branch out and offer services and resources in Canada, Mexico, and England and Wales. We found that thousands of our patients and caregivers were not receiving education, information, and resources. WeHaveAFace wished to help “fill the gaps” and not reinvent wheels along the way. Each of our HUBS (Huntington’s Universal Base Supports) are

Led by Director B r e n d a Ve g a , W H A F Te a m Mexico is in the process of rolling out WeHaveAVoice Radio in Spanish, and articles within our WeHaveAFace Global Times newspaper. Brenda Vega is also working closely with our Educational Partners – AMEH (Mexican Association for Huntington’s disease). Donaji Toledo of AMEH is working diligently to combine efforts with WHAF Mexico to pilot these programs and many more. Daniel Medina (Vice President of WeHaveAFace USA) works in tandem with Team Mexico and Team USA. Team Mexico: WeHaveAFace Mexico

WeHaveAFace England and Wales

legal, nonprofit, registered charities.

WeHaveAFace Canada

Led by President, Carol Kennedy, and Vice President, Steve Kennedy, WHAF Team England and Wales

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WeHave We HaveA AFace have successfully rolled out our HD3 Training across the Region. Accredited by Skills for Care, we have successfully trained over 250 medical professionals who are now knowledgeable about Huntington’s and Juvenile Huntington’s disease. Team England and Wales will continue this training platform in 2021. Team England and Wales: WeHaveAFace England and Wales

We look forward to highlighting each of our incredible teams in future magazines.

WeHaveAFace Research Program It was also our goal to provide financial support for Juvenile Huntington’s research. WeHaveAFace was able to send financial support to Dr. Kyle Fink, Dr. Jan Nolta, and Dr. Peg Nopoulos (Kids-HD, Kids-JHD) research programs. We are proud that our donation of $12,645.00 was utilized for JHD research by theses amazing researchers!

Huntington’s Disease Assistance Fund Launched in 2016, The “Huntington’s Disease Assistance Fund” helped those directly affected by Huntington’s disease and Juvenile Huntington’s. Currently, there are very few financial resources for individuals within Huntington’s disease community. Mary Etta Robertson and Kimberly Spears have

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worked diligently to help many patients and families throughout the years. WeHaveAFace provided families with: groceries, clothing, utility bills, rent, adaptive equipment, wishlists, Thanksgiving dinners, Christmas dinners and presents. We are proud to report that since 2016, we were able to provide almost $68,000.00 of assistance to our HD/JHD families. There is nothing more rewarding than the feeling of helping those in need!

Team USA and Team England and Wales – 3 Peaks Challenge Many organizations step outside the box when it comes to raising awareness of their disease oriented group. J a me s Va lv a no (Founder of WeHaveAFace USA), and Daniel Heath (For mer President of WeHaveAFace England and Wales), decided to take on a huge task. After much planning, Valvano decided to join Heath on a yearlong health and exercise program. The goal was set! They were going to complete the 3 Peaks Challenge! Climbing the three largest mountains in Scotland, and England and Wales, was going to be the challenge of a lifetime! WeHaveAFace thanks uniQure and our private donors for their support for our three climbs. During our long trek, and challenge, we were able to share pamphlets and educational materials about Huntington’s and Juvenile Huntington’s disease. We were blessed to have fulfilling group conversations with the general public in England, Wales, and Scotland, who allowed us to discuss all aspects of the disease, including possible treatments in the pipeline. Hundreds of people supported these climbs via Facebook and Twitter.

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Watch the 3 Peaks Challenge climbs!

HD Trial Finder WeHaveAFace knows how important it is to o u r H u n t i n g t o n ’s community to have easy access to locating trials and studies within the USA. Since 2017, WeHaveAFace has supported the efforts of the HDSA with their HD Trial Finder platform. We are pleased to help patients and caregivers by providing the HD Trial Finder link, and facilitating the supports they need. This robust and easy-touse platform makes locating studies and trials very easy and stress free. Valvano wrote an article in the WeHaveAFace Global Times which reviewed this amazing platform. Founder, James Valvano, interviewed Louise Vetter (President/CEO) of the Huntington’s Disease Society of America (HDSA) on WeHaveAVoice Radio. Valvano and Vetter discuss all aspects of the HD Trial Finder in detail. WeHaveAFace will continue to support this powerful platform, and provide our community with the necessary information they need for studies and trials. We are very proud to be among the Partners in Clinical Trial Education via the HDSA.

Click here to listen to interview. *Thanks to Team UK - the Kennedy’s for their love and hospitality and permission to stay at their home during our many stays while filming The Purple Road and our fundraising events. We also thank the few amazing hostels for their warm and loving welcomes during our brief stays.

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WeHaveAFace has also helped hundreds of patients and families navigate to the appropriate “Locate Resources” provided by the Huntington’s Disease Society of America (HDSA). These vital resources help patients and families locate: Support Groups, Centers of Excellence (CoE’s), Genetic Testing Facilities, and so many more resources. We

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WeHave We HaveA AFace will continue to help our patients and families find all avenues of support. Click here to find resources. Or, watch this video which will help you navigate the “Locate Resources” page.

WeHaveAFace Team USA WeHaveAFace (USA), is proud to have a diverse group of individuals across our Volunteer Board, and Regional Advocate Program. Sometimes people forget that prior to Huntington’s disease many within WHAF USA held employment as medical professionals – RN’s, LPN’s,

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CNA’s, Hospice and Palliative specialists and Group Home managers. Many of our team were business owners, worked in Corporate America, as well as served in our United States Armed Services. The diversity of WHAF USA has always been something we’ve celebrated and continue to honor. WeHaveAFace is honored to have volunteer members who are, or have been, caregivers of loved ones with Huntington’s or Juvenile Huntington’s disease. We celebrate their desire and passion to help move our mission forward to better the lives of our patients and caregivers. Many on our team hold fulltime employment, yet continue to advocate. Our team consists: Teachers, Sheriff Department Management, Department Store employees, Nurses, LNA: Licensed Nursing Assistants, CHPNA: Certified Hospice Palliative Nursing Assistants, Early Childhood Educators, and Child Care Services. WeHaveAFace understands that individuals with HD/JHD had achieved so much in their lives, prior to facing this disease. We are honored to have many on the team who have received degrees in: Computer Science, Data Processing, Qualified Teaching, Qualified Trainers, Business Administration, Marketing, Management and Hospitality, Technical Education/Industry Training, and Psychology.

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WeHave We HaveA AFace WeHaveAFace is also consistently transparent via our reporting as a 501(c)3 Registered Charity. We have been rewarded with the GuideStar Platinum Seal of Transparency: 2017-2020. Among our reporting via GuideStar, we also continue to highlight our diversity as an organization, and our desire to remain as an organization who is inclusive.

Team USA Diversity WeHaveAFace continues to receive requests from our incredible community to join our advocacy missio. We are blessed to have thousands of patients, caregivers, and families who help move our mission forward. We are always excited when we add new advocates to our organization. Join us today!

WeHaveAFace Educational Conventions! WeHaveAFace held four educational conventions since 2016 These events were very successful in broadening awareness of Huntington’s and Juvenile Huntington’s disease. At our 2nd Annual Convention, we decided to hold a “Summit” of HD/ JHD organizations. We were pleased that organizations gathered together to discuss how each of us can better serve the Huntington’s and Juvenile Huntington’s disease community, internationally. Among the amazing HD/JHD organizations were: HDSA, HDYO, Help4HD, HDCare, UC Davis, University of Iowa, and HDA of England. Although each of our conventions are noteworthy, our 2nd annual educational convention aimed at highlighting the work and endeavors of our international HD/JHD organizations.

SOCIAL MEDIA WeHaveAFace harnessed the power of social media platforms since 2009. We are so proud that our organization has the most connected following across Facebook, Twitter, Instagram, Pinterest, SoundCloud, Spreaker, iHeartRadio, and Vimeo. We truly thank our community with all of our hearts. Your love, support, and feedback has helped us become who we are today. Piloting successful and robust media platforms is what WeHaveAFace strives to do. Our videos, films, and program suite are specifically designed for ease of use, and effectiveness, to delivery quality education, information and resources to our HD and JHD community. Prior to launching our programs, WeHaveAFace engages with the community for ideas and recommendations. It truly about all the patients, caregivers, and families we serve each day. Stay tuned as we will be rolling out some exciting new platforms in 2020-2021! View our Social Media connections!

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Awards given by WeHaveAFace • Lifetime Achievement Award: Dr. Herwig Lange (GHI) • Advocate of the Year: Erin Wade • Service Award: Daniel Medina • Excellence in Research: Dr. Peg Nopoulos (University of Iowa, Dr. Jan Nolta (UC Davis), Dr. Herwig Lange (GHI), Dr. Ed Wild (College of London) • Community Outreach Award: Michael Greene (Greene’s Quality Construction) • Presentation of the Year – “Huntington’s Disguise”: Jimmy Pollard (CHDI) • Best Program of the Year – “HIPE”: Help4HD.org (Two years in a row) • Caregiver of the Year: Cindy Moore (WHAF Canada) • Spirit Awards: Erin Wade and Sheila Jess

2019 10-Year Anniversary Convention At our 2019 Educational Convention, we celebrated a milestone in our history. This event highlighted each of our accomplishments over the last decade. Throughout the convention we held breakout sessions and our attendees could visit different locations within the hall to obtain education, resources, and information. Highlights of the day… We were blessed to have UCF (University of Florida) students present their posters regarding their work for Huntington’s disease. This breakout session was run by Emily Machiela, Ph.D. (UCF).

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Our Guest Speakers: Dr. Herwig Lange (George Huntington Institute), 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) Watch our Convention videos

Volunteer Medical Advisors WeHaveAFace is proud to have medical professionals who volunteer their time to assist us with our programs and advancing education, information, and resources.

Senior Medical Advisors: Dr. Herwig Lange of the George Huntington Institute - Germany Doctor Herwig Lange is a neuropsychiatrist and has over four decades of experience working with patients and families affected by Huntington’s and Juvenile Huntington’s disease. His research includes: early diagosis of HD, especially in the pre-motor and presymptomatic phase, drug and non-drug treatment of HD (rehab, deep-brain stimulation, computer-based therapy, environmental influence), cognitive and affective symptoms, objective measures of symptoms. He (co)authored more than 90 publications on HD. Since 1991, he has been a member of the Research Group on Huntington’s Disease World Federation of Neurology. Since 2004 member of the

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WeHave We HaveA AFace European Huntington’s Disease Network - principal investigator. Since 2018 full member of the Huntington’s Disease Study Group. WeHaveAFace is blessed to have Dr. Herwig Lange as our Chief Medical Advisor.

how to communicate about genetic conditions and

More about Dr. Lange

to communicate with kids. Dr. Finn is passionate about

Dr. Kelsey Finn Dr. Kelsey M. Finn is a geneticist, bioethicist, and empathy enthusiast. She received her Ph.D. in Human Genetics from Johns Hopkins School of Medicine and completed her post-doctoral training in Bioethics at Mayo Clinic. Dr. Finn has devoted a large part of her career to researching whether, when, and

of the human condition, and helping parents, family

health information with children. She has interviewed countless parents, kids, and health providers to learn from their experiences and perspectives on how best normalizing and embracing the uniqueness and diversity members, teachers, and health providers navigate talking with kids about difficult topics. In 2020, WeHaveAFace launched an international survey (in multiple languages), to assist Dr. Finn with her current research initiative - “Survey on Talking With Kids About HD.” As per our survey: “Do you have at least one child who is atrisk or affected by HD? The medical community and researchers would love to hear from you. Please complete the survey below to help researchers understand how we may better support the HD community in talking with kids about HD. We thank you in advance, and you must be at least 18 years old to

Poetry: 3rd Volume: “The Huntington’s Project: Blue and Purple” WeHaveAFace is excited to announce that we are planning to publish our 3rd poetry book! We are seeking submissions from the international Huntington’s and Juvenile Huntington’s disease community. Visit: WeHaveAFace Poetry Project for our 1st and 2nd volumes. Submit your poem today! You can also email your poem to: [email protected]

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complete the survey.” Please click on the survey and participate. Your participation is greatly appreciated.

We must continue to facilitate help and support for parents and guardians who have children with Huntington’s disease and Juvenile Huntington’s disease, and children who are at risk.

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WeHave We HaveA AFace We H a v e A F a c e t h a n k s T E VA Pharmaceuticals for their support: 2016 – 2019. We appreciate their willingness to help our programs, which have grown internationally. We look forward to future support from TEVA in 2021.

2020 and beyond…

Listen to James Valvano interview Dr. Kelsey Finn about this research program. D r. K e l s e y F i n n w r o t e a n incredible book - Grandma Has Huntington’s Disease, and It’s Okay. This book tells the story of a grandmother who has Huntington’s disease, a genetic condition, from the perspective of her grandson, Leo. Huntington’s Disease affects 5 to 7 people in every 100,000 people of European ancestry, and also affects people of some other ancestries but less frequently. This book is intended to serve as a way to communicate with children about Huntington’s Disease, and help children understand what it means for them and their family member affected by Huntington’s Disease.

WeHaveAFace 2020 Since our inception in 2009, WeHaveAFace has tried to better the lives of our Huntington’s and Juvenile Huntington’s community. As with all organizations, changes are necessary - most of the time they are inevitable. Throughout the years, our website has had many “facelifts” and improvements. Our programs are consistently monitored and adapted. However, our mission has never changed. Our goals were set in stone in 2009, and they will remain in stone until a viable treatment or the cure is found.

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WeHaveAFace will be launching – WeHaveAFace TV in September 2020. Harnessing technology and robust multimedia platforms, this program will provide quality education, information, and resources – globally. We look forward to having incredible special guests join us from their international locations. See the WeHaveAFace TV Promo Video!

Virtual Support Groups – Jitsi Meet! WeHaveAFace has held many in-person and virtual support groups over the years. Due to COVID-19, WeHaveAFace invites you to join our next virtual support group meeting! We continue to harness secure and robust technologies to reach and support our HD/JHD community on a global scale. *Each virtual support group will allow for a maximum of 10-15 patients and caregivers to provide the necessary time and support for each user. *If you will be joining us via your Smart Phone, please visit your Android or Apple App Store and download the free Jitsi application. If you will be joining us via your

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WeHave We HaveA AFace laptop, desktop, or iPad, you will not need to download the application. Each of these weekly virtual meetings are hosted by Jennifer Lynn Almeida and Crystal Zachary.

Virtual Fundraising Events!

Visit the Virtual Support Groups page on our website!

WeHaveAFace Telemedicine 2020-2021 WeHaveAFace is pleased to provide telemedicine calls for patients and caregivers for Huntington’s and Juvenile Huntington’s disease. It is paramount that we help our community as often as possible. WeHaveAFace harnesses the most secure and robust telemedicine applications. Safety and security are our main concerns when holding these telemedicine calls. Our Medical Advisors, Dr. Herwig Lange, and Dr. Kelsey Finn are willing to help our community.

D u r i n g t h e s e d i ff i c u l t t i m e s , We H a v e A F a c e will continue to hold events to raise funds for our Huntington’s Disease Assistance Fund. We look forward to announcing some fun ways to connect with our community during COVID-19. Visit our Events page for upcoming virtual events!

Multimedia Program Suite

Dr. Herwig Lange will provide the following support: HD treatments, Behavioral problems, and Psychological issue.

Dr. Kelsey Finn will provide the following support: How to talk to your children about HD.

These telemedicine calls are not offered as a substitute for professional mental health care or medical care and are not intended to diagnose, treat, or cure any mental health or medical conditions.

WeHaveAFace invites you to view our newest programs for Huntington’s and Juvenile Huntington’s disease. Our incredible team works diligently to build new educational platforms. Our community is the catalyst for each program we create. It had been that way since our inception ten years ago, and it will continue onward until a viable treatment or the cure is found. We thank all of you throughout the years for your ongoing love, trust, and support. Never forget that we are in the trenches with each of you every single day. WeHaveAFace was created by the Huntington’s community and for the Huntington’s community.

Visit our Telemedicine website for more information!

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As of 2020, WeHaveAFace has received private funding which will help our organization move forward into 2021. We truly thank our donors for their love, support, and trust in our mission.

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.” ­—Margaret Mead #YouAreLoved

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