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Huntington's Disease Youth Organization

HDYO Board

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

BJ Viau – Board Chairman

HDYO Board

Welcome to HDYO! This organization has been my passion since Matt first shared his vision to me back in 2010. I come from a family impacted by HD and lost my mom back in 2011. My Mom, Debbie, continues to be my motivation and inspiration to grow HDYO to help more young people and families. I used to hold a fundraiser called a ‘Hoopathon’ (think basketball, although I can hula-hoop like a champ) to raise money and awareness for HD. Over fifteen years the event raised close to a million dollars! My current volunteer role as the Board Chairman challenges me to strategically align our missions and visions with the needs of young people, families and our supporters. It’s a challenging role, but I love the opportunity to work with a fantastic group of unselfish individuals who want to make a difference in the lives of young people.

I currently live in Delray Beach, Florida (USA) with my wife, Jamie and step-daughter, Harlin. We enjoy spending our time outside at the pool, on the beach, or on the golf course! Educationally, I completed my MBA at Northwestern’s Kellogg School of Management in 2017 and undergrad marketing degree from the University of St. Thomas in St. Paul, MN (Go Tommies!).

Professionally I work for Horizon, a therapeutics company focused on making medications available for rare and rheumatic diseases. Before Horizon I spent a handful of years at Lundbeck Pharma. Lundbeck was the first company to bring an FDA approved medication (Xenazine) to the USA for people with chorea associated with HD. Please connect with me on LinkedIn, here.

HDYO is here to help you so please do not hesitate to reach out to anyone on our team. Together through support, education and involvement we hope to empower everyone to live healthier lives. I best share my passion for HDYO through this talk I gave back in 2017 at a Teva Pharma employee meeting. You can reach me anytime at BJ@HDYO.org

Donna Spencer – Vice President

HDYO Board

Welcome & thank you for visiting HDYO! I come from a large family impacted by HD. The diagnosis came as a surprise as my grandparents had not shown any signs or symptoms before their passing. For some time, we were not sure where the gene came from, grandma’s side or grandpa’s side of the family. We now strongly believe it’s on my grandma’s side as a cousin of my mom’s was diagnosed. My mom, Judy, has HD, and is one of seven children in the family. The total impact in the immediate family is three generations with over 50 people “at risk”. I’m fortunate to be gene negative.

I live in Metro Detroit, MI (USA). I have an MBA w/ a Marketing emphasis. Professionally, I have been employed for over 15 years in the biotech industry supporting patients and families impacted by rare disease. I am a contributing working member of the Neurological Disease Working Group for Alliance for Patient Access (AfPA). I have also volunteered for Immune Deficiency Foundation, and the MI HDSA Board, serving as both Treasure and President.

I have three kids and a pup named Cooper. My oldest daughter is a nurse on the neurology floor of UPMC, my son is a student at Wayne State University studying Asian Studies, and my youngest daughter is a Biology/Pre-Med student at Loyola University Chicago. All three kids have volunteered in various ways in the HD Community.

I am incredibly excited to be a part of the HDYO Board! I look forward to working with a group of individuals who have the same visions as I – to make a positive difference and empower our youth. Please do not hesitate to reach out to us if you or anyone in your life has been touched by HD and needs resources! I can be reached at: Donna@hdyo.org or through LinkedIn.

Danielle Valenti - Secretary

HDYO Board

Danielle has volunteered for numerous organizations over the years, but coming from an HD family, she is most passionate about generating awareness for HD by conducting educational workshops, fundraising, and public speaking. Danielle joined the HDYO board in 2019 and is also actively involved with Huntington’s Disease Society of America, Albany Affiliate. You can hear Danielle’s story through a TedX talk done in 2015.

Born and raised in Massachusetts, Danielle studied marketing at Western New England University. Her day job is championing client success as a VP at Merit, a tech company in Albany, NY. Out of the office, you’ll likely find Danielle chasing around her 1-year-old daughter, McKenna, with her fiancé, Chris, traveling the world, working out, or eating almond butter from the jar.

Connect with Danielle via email Danielle@hdyo.org or through LinkedIn.

Ana Wieser – Co-Chair Marketing

HDYO Board

While I am new to the HD community and had little knowledge of Huntington’s Disease prior to starting my work with HDYO, the organization especially interested me because it addresses a condition that is not widely understood. The education and support HDYO provides for young people is invaluable, and I feel so proud to be a part of it!

I’ve worked in various marketing roles for the last six years and started my own full-time freelance copywriting and content marketing business in 2018. Writing is something I am incredibly passionate about, and I’m excited to bring the creativity I use every day to help young people around the world impacted by HD.

After spending over six years in Chicago, I recently moved back to Minnesota with my husband, where we are both from. We love to travel, and if I’m not working or trying to plan our next vacation, I am probably running, reading, or spending time with friends and family.

Please connect with me ana@HDYO.org or through LinkedIn.

Clare Braithwaite – Marketing Co-Chair

HDYO Board

Hi I’m Clare. I live in Manchester in the United Kingdom.

I come from a family affected by HD. My Mum has it and is still doing amazingly well in her 70s. She is my inspiration and my Dad who looks after her at home still along with some amazing carers . We were brought up knowing all about HD and being involved with the disease in a positive way, including being members of the HDA in England for many years.

I was diagnosed gene positive in 2018. I’ve no symptoms at the moment. It was a tough time but I dealt with it pretty well which was a result of the amazing support of family, friends and the HD family. Fortunately my sister Jo tested gene negative a few years ago. She was an incredible support to me through my testing process and continues to be for me and the family.

As a family we’ve done lots of fundraising for the HDA and been involved with the support groups and branches. I love running (slowly!) and have run the Great North Run (a big half marathon in England) four times to raise money. My sister Jo, brother in law, Matt, and I also run quizzes as fundraisers which are great fun and raise lots of money and awareness. We fight HD as a family in a positive way and make sure even in tough times there’s lots of laughter! When I’m not running with my fantastic club Chorlton Runners in Manchester I love spending time with friends and family and travelling.

I’ve over 20 years’ experience in marketing, working for companies like Kellogg’s and Nestlé and a marketing agency ATOM. I’m now starting a business as a life coach. I’ve got lots of experience that I can bring to help HDYO and young people and I’m passionate about doing that.

My aim is to help HDYO over the next few years in all areas but especially from a marketing point of view. Please get in touch if you need anything via email Clare@hdyo.org or through LinkedIn.

Eric Miller – Corporate Fundraising Chair

HDYO Board

Eric brings 25 years of pharmaceutical sector experience in a variety of marketing commercial roles with Eli Lily, Cerus and InterMune & Medivation. While at Medivation, Eric was introduced to Huntington’s Disease through their clinical programs working to bring medications to market for HD and has been involved in the HD space for over a decade. In 2010 Eric founded a pharma industry commercial services agency, Optio Bio. Optio has made a strong reputation in the rare disease space and excels in other market challenges where clients require experienced service and strategic insights throughout the course of a project. Optio has provided US, European, Canadian, and Japanese clients with global commercial projects such as market research, new product planning, brand management, competitive intelligence and strategic advisory work. His HD clients include NeuroSearch, Omeros, Raptor, and Teva.

Outside of work, Eric has three boys and lives in the San Francisco area.

You can reach Eric through Eric@hdyo.org or through LinkedIn.

Seth Rotberg

HDYO Board

Seth found out as a 15-year-old that his mom had Huntington’s Disease. Five years later, Seth decided to go through genetic testing and found out he tested positive for HD, just like his mom. He has used his results along with his mother’s 17-year battle as motivation to fight back and get involved. Over the years, Seth shifted his focus to support young people because he knew the importance of connecting with others in the community along with finding the proper resources to help deal with the everyday challenges.

He is a rare disease advocate and motivational speaker who has done over many public speaking talks, with the most notable being at TEDxNatick and Global Genes Patient Advocacy Summit.

Seth was born in Boston, MA (USA). He went to college at UMass Amherst, where he obtained a Bachelor of Science degree in sport management. In 2018, Seth obtained his Master’s in Nonprofit Management at DePaul University.

He currently resides in Washington DC where he works as Partnerships Manager for the health company Inspire. In his free time, he enjoys playing video games, reading, playing and watching sports, and going to the gym.

Connect with Seth through email seth@hdyo.org or through LinkedIn.

Dr. Bonnie Hennig-Trestman – Research Chair

HDYO Board

I have over 30 years of experience as a clinical therapist and have worked with people who have HD and their families since 1999. Currently I am the president and owner of HTA Consulting, PLLC where I provide tele-therapy to people at-risk for HD, people affected by HD, and to families. I also conduct behavioral research.

I provide educational lectures on various topics related to HD to healthcare professionals and to the public throughout the USA and internationally. I have been involved in HD research, conducting both observational and clinical trials. I am a member of the Huntington’s Study Group (HSG) and the European HD Network (EHDN).

In 2003, I began to lecture on the topic of talking to kids about HD and in 2005 wrote a book called, “Talking to Kids About Huntington’s Disease: a book for people who know children with HD in their family”. The book was revised in 2017 and it has been translated into multiple languages. You can purchase a copy through Amazon Kindle via this link.

I have attended the North America HDYO camps as a staff member since 2015 and I am honored and thrilled to serve as a member of the HDYO Board of Directors, Chair of Research.

My passion to support the HD community is matched by the enthusiasm of the staff and volunteers at HDYO. I believe that HDYO is an excellent resource for kids, teens and young adults to obtain education, support, motivation and friendship. HDYO is a place where you never need to explain what HD is and there is always someone who will listen and support you. All you need to do is reach out. We are here for you!

Please connect with me through email DrBonnie@hdyo.org or through LinkedIn.

Lindsay Morrison

HDYO Board

Lindsay is an Ohio native and Buckeye for life. Lindsay comes from an HD family where both her father and grandfather suffered from Huntington’s disease. She is an active member of the Ohio Valley chapter of the HDSA where her main focus is on awareness, support services, and opportunities for young people in HD families.

A registered nurse by trade, Lindsay has acted as the ‘camp nurse’ and volunteer at HDYO’s North American Youth Camps. She currently owns her own retail clothing business (www.thesisushop.com- $1 from every item purchased goes back to the HDYO!) and is a Coach at Orangetheory Fitness. Outside of clothes, fitness, and her cat, Panda, and husky, Penny, Lindsay and her husband Kyle are expecting their first child in the fall of 2019. Since joining the HDYO board two years ago, it has been a privilege to represent and advocate for the work that HDYO does and be part of the voice for young people in HD families and see the organization evolve and grow.

Jimmy Pappadeas – Volunteer Chair

HDYO Board

There was a great deal of uncertainty growing up knowing that HD was in our family, but it not being something that we openly talked about. My mother is gene positive and has been progressively symptomatic the last several years. I learned what I could when I could handle new bits of information, but I had struggled to process everything on my own. It was also a challenge to navigate how to connect with others outside of my family who really understood what I was going through.

I was introduced to HDYO through a series of random chance occurrences when I was tired of feeling isolated and it was great to finally talk with others who just “got it” and who were doing something to help others. I think HDYO’s mission focusing on young people impacted by this disease is incredibly important and it offers the kind of support I wish I had years ago. I was inspired to get involved to help the organization identify more individuals who could benefit from its resources and to empower others like me who might also want to make a difference.

I grew up in Maryland, graduated with a degree in business from the University of Maryland, and have lived in the DC area for the past 6 years. My background is in management consulting, having worked in areas of strategy, facilitation, and project coordination. I am passionate about harnessing human-centered design principles to identify and solve important problems and I hope to use this perspective and my skills to help those in the HD community.

Please connect with me Jimmy@hdyo.org or through LinkedIn.