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HDYO Board

July 13, 2020

Huntington's Disease Youth Organization

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

www.hdyo.org

HDYO Board

Executive Committee

Hayley Hubberstey – Executive Board, European Chair

HDYO Board

Hi I’m Hayley, I am from Wirral in North West UK, near Liverpool. I’m a science geek by background and now work in health economics specialising in understanding the impact of rare diseases to help enable access to new treatments.

I have been involved with the HD community for about a year and it’s been such a special experience. As part of my current job I’ve have the pleasure to attend and learn from many HD events and conferences. I felt instantly welcomed and at home as a professional new to the community. I have made new friendships and have met many inspiring and dedicated people.

I have volunteered with young people in community groups and as a teaching assistant previously and I was looking to volunteer for a charity utilising my business experience, scientific knowledge and passion for rare disease patient advocacy. HDYO was a perfect fit.

My education was in pharmaceutical sciences and I obtained my PhD in Biochemistry. I worked at Unilever a global consumer goods company for 5 years. I joined as a laboratory scientist and then worked as a project manager. I gained experience in delivering successful projects whilst working alongside global cross functional teams. I managed these projects from project conception through to product launch.

I now work for HCD economics as a real-world evidence manager. We use peer-reviewed methodologies to gather evidence to inform and challenge healthcare policies and to improve patient outcomes. We collaborate with a diverse group of healthcare professionals from academia, charities, patient advocates, clinical specialisms and industry sponsors.

In my spare time, I enjoy various crafts and baking. I also enjoy countryside and woodland walks with my Husband and 8-year-old golden Labrador. I am very passionate about mental health and wellbeing and am very proud to have qualified as a mental health first aider.

I am thrilled to be joining the HDYO board and excited to be part of an amazing team that works to make a positive difference for young people in the HD community. If you have any questions , or want to reach out for support and resources on HD, please drop me an email anytime at hayley@HDYO.org or connect with me on LinkedIn here.

Rudolf H Schaffrath - Executive Board, Treasurer

HDYO Board

Rudolf has 43 years of pharmaceutical sector experience. First as chemist working with organic syntheses building molecules for the treatment of cardiovascular diseases followed by different roles within pharmaceutical R&D such as clinical Project Leader, Product Life Cycle Director and as CEO of a clinical research organization. Following this start research Rudolf broadened his experience into a variety of marketing/commercial/executive roles with AstraZeneca, NeuroSearch and Teva. Rudolf has also been involved in and founded different BioTech companies.

During his tenure at NeuroSearch, Rudolf was introduced to Huntington’s Disease while leading marketing/market development for pridopidine for HD. Rudolf joined Teva as VP of Market Planning for Neurodegenerative Diseases following the acquisition of pridopidine and has been involved in the HD community for more than 12 years.

Rudolf departed Teva to found a pharma industry consultancy services agency Xegment Access AB. His company is now engaged mostly in East European, Middle East and North African markets. Contributing to development of local pharma companies by helping to adopt to International requirements, guidelines and financials. Xegment Access is also engaged in bringing new technologies and competence from LatinAmerica to EU and vice versa.

Rudolf has two grown up girls and lives with his wife about 1 ½ hour drive west of Stockholm, Sweden. He enjoys his low weight race and mountain bicycles and his big heavy motorbike.

Rudolf is easy to reach via rudolf@hdyo.org or through LinkedIn.

Eric Miller – Executive Board, Corporate Fundraising

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.

Research Committee

The aim of the Research Committee is to build scientific evidence on the importance of engaging and supporting young people impacted by HD and disseminating this through publication and conference presentations. Through our own primary research and partnerships, we will: characterize the ways in which HD can impact young people both physically and emotionally; support research in Pediatric and Juvenile Onset HD populations; and guide research within the premanifest HD population in preparation for prevention trials. An anticipated outcome of this work is to encourage the integration of youth services into HD clinics.

Dr Bonnie Hennig-Trestman – Research Co-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 Director of the Carilion Clinic HD Program in Roanoke, VA. I am also an Assistant Professor at Virginia Tech Carilion School of Medicine in the Department of Basic Science Education. In addition, I am the Special Programs Director for HD Reach in Raleigh, NC. 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.

Dr Lauren Byrne Co-chair Research Co-chair

HDYO Board

My HD story started before I was even born with my grandmother who died from HD. I grew up with my uncle and aunt both affected by HD and in wheelchairs. In my early teens I learned that my dad had the HD gene. In the years to follow I was aware of the subtle changes and in his behaviour and eventually his movements and cognition. There are currently over 30 people at risk in my extended family… a constant motivator for the work that I do.

I was always interested in science and was naturally drawn to the brain and neurodegenerative disease. Whilst completing my Bachelor’s degree in Biology at Imperial College London, I was inspired by Dr Jeff Carroll to pursue a research career in HD. I graduated my undergrad in June 2014, tested negative for HD in July 2014 and started a masters in Translational Neurology at UCL Institute of Neurology, September 2014 – with the sole purpose of getting a project working in Prof Sarah Tabrizi’s research group (Our HD research Kahleesi!). During my masters, I serendipitously met Dr Ed Wild at a time when he needed a research assistant and I needed a job. I haven’t looked back since.

I am now a HDSA Berman-Topper Postdoctoral fellow and feel so privileged that my research work on biofluid biomarkers might help with the development of drugs for HD. I am so excited to be a member of the HDYO board and co-chair the Research Committee with Dr Bonnie. It is a privilege to be a part of the efforts to support, educate, and empower the next generation of people affected by HD.

Marketing Committee

Ana Wieser – Marketing Co-chair

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.

Education Committee

Donna Spencer – Education Co-chair

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.

Heather Ging – Education Co-chair

HDYO Board

HD came as a surprise to my family when my aunty was diagnosed as my grandad had died before symptom onset. I have always grown up knowing what HD is – and I found that the rareness of the disease was also reflected in the amount of people who know about it! This is what drove me to pursue my studies in science. I completed my undergraduate degree at University College Dublin (UCD) in Biochemistry and Molecular Biology, which led me to my Masters in Neuroscience at University College London (UCL). I worked on triplet repeat disorders including HD and knew that one year’s research wasn’t enough, so I carried on to do a PhD in HD research at UCL. I currently work in the lab of Prof Sarah Tabrizi as a Postdoctoral Research Associate to investigate more potential therapeutic targets as I clearly can’t get enough of HD. I joined HDYO as although I’m involved in the research to hopefully advance all that we know so far, I wanted to support the outreach and understanding of this disease on a more general day-to-day level. If people don’t know about HD then how can they help! I’m inspired daily by the HD community and I want to give something back to show my gratitude for everything that has been achieved so far.