Huntington Society of Canada
YPAHD Day 2021
11/13/2021
Agenda
Speakers

Brynne Dalmao

Brynne Dalmao

Dr. Brynne Dalmao originally studied Kinesiology at The University of Western Ontario, then graduated summa cum laude from the Doctor of Chiropractic program at the Canadian Memorial Chiropractic College in 2009.  She completed the Clinical Sciences Graduate Studies program in 2011, studying locus of control in patients with Huntington disease as her research thesis.  In 2012, she completed the College of Chiropractic Sciences Fellowship exam and currently serves as the Secretary and Examination Chair on the Board of Directors for the College of Chiropractic Sciences (Canada). 

 

Professionally, Brynne divides her time between private practice at Village Chiropractic in Orangeville, ON, teaching at George Brown College and the Canadian Memorial Chiropractic College, and quality assurance work at North York General Hospital.  Her research focuses on patient outcomes and best practices in clinical education. 

As an HD family member, Brynne has been actively involved in the Huntington Society of Canada as a volunteer of the Toronto Chapter of the HSC and the international HD community for many years.She was the founding president of Young People Affected by Huntington Disease (YPAHD), one of the founders of Huntington Disease Youth Organisation (HDYO), and currently serves on the Young Adults Working Group of the European Huntington Disease Network. 

Celine Payne

Celine Payne

Celine is 28 years old and is from Sarnia, ON. She have been a part of the HSC for about 4-5 years now.  She started by attending her first YPAHD day back in 2017. It is really what lit the flame in her to start diving into fundraising and spreading awareness. It also helped her a lot with coping with having HD in her family. Her mother had HD, she battled this disease for a long time and passed away two years ago at the young age of 47. She have 4 siblings who are also at risk. Due to my mothers passing and Covid she has not been as active in the HD world however hope to get the flame re-lit soon! She has met so many amazing people through the HSC and the programs they offer such as YPAHD and the mentorship program. She strives to help someone out the same way the HSC did for her! 

Corey Janke

Corey Janke

Dr. Rachel Harding

Dr. Rachel Harding

Dr. Rachel Harding is an HDSA Berman Topper Career Development Fellow working at the Structural Genomics Consortium at the University of Toronto. Dr. Harding researches the 3D structure and shape of the huntingtin protein to try and understand how this molecule works and how this Huntington disease mutation might affect this big and complex molecule. 

Dr. Tam Maiuri

Dr. Tam Maiuri

Dr. Tam Maiuri works as a Research Associate in Dr. Ray Truant’s lab at McMaster University in Hamilton, Canada, where her research is focused on the role of the huntingtin protein in DNA repair. Tam is also an active member of the HD community who regularly participates in fundraisers, education events, and knowledge translation through HDBuzz.net.

Erin Paterson

Erin Paterson
Toronto author and public speaker, Erin Paterson, tested gene positive for Huntington’s Disease (HD) in 2006. Shortly after she started suffering from depression, then received more crushing news, she was infertile. Despite those diagnoses she was determined to have a family and live a joyful life. She is on a mission to positively impact other people’s lives by writing and speaking about genetic disease, depression, and infertility. She shows it is possible to live a meaningful life even when faced with unexpected obstacles. Her stories have appeared on over a dozen sites including KevinMD, TheMighty and HuntingtonsDiseaseNews. She is the author of, All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness. Erin Paterson is also the founder of Lemonade Press, a local publisher focused on empowering patient communities by helping people write and share their own journey’s in specialized medical anthologies

Erin Stephen

Erin Stephen

Erin Stephen, BSW, RSW is the Saskatchewan Resource Centre Director as well as the Youth Mentorship Coordinator for the Huntington Society of Canada. Erin works with individuals, families and services providers affected by HD. She offers support, education, information and resources on HD and works closely with the Genetics Clinic and the HD Clinic in Saskatchewan.

 

Throughout her career as a Social Worker Erin has always been passionate about working with children and youth. As the Youth Mentorship Coordinator Erin is responsible to recruit and train the mentors as well as provide support and guidance to the mentees and the mentors

Graeme Wood

Graeme Wood

Graeme Wood is the South-Western Ontario Resource Centre Director for the Huntington Society of Canada and social worker in private practice.  For the past 8 years, Graeme has been working with people affected by chronic diseases and their families.  With experience in individual, couple, and family counselling and mediation, Graeme has a keen interest in the way people interact with each other.  In his spare time, Graeme can be found in the great outdoors or nursing various wounds on his hands from woodworking. 

Irene Blighe

Irene Blighe

Irene is originally from Ireland and moved to Calgary in 2014 to work in the pediatric therapy field. She first learned about HD in her family in 2013 and was ecstatic to hear about YPAHD in 2015 when she connected with the Southern Alberta chapter. She has attended multiple YPAHD days/conferences since and values the support the HSC has given her over the years. Irene will talk about her experience with genetic testing this year. 

Jaclyn Skinner

Jaclyn Skinner

Jaclyn is an active volunteer in the Huntington disease community, currently holding the role of President for the London chapter. She is the past president of YPAHD and have been involved since it’s fruition. Her family is impacted by Huntington’s disease and she is honoured to share her experiences to help others with their own. She has a Masters in Social Work and is currently working as a crisis counsellor. She has a golden doodle named Elliot and is the proudest aunt to 10 littles.

Janet Lucas

Janet Lucas

Janet is a genetic counsellor in the Division of Medical Genetics in Saskatoon and  has been practicing for 20 years. She has practiced in many areas of genetics but her main focus now is prenatal/reproductive counselling.

Jenna Heilman

Jenna Heilman
After several years as a professional focusing on strategic planning, Jenna's interest and passion to make a bigger impact in people’s lives redirected her focus to non-profits. She most recently was the Executive Director for the Head for the Cure Foundation to advance advocacy and care for brain tumor/cancer patients and caregivers. She has been honored to join the team at HDYO in August 2021 and continues to focus her attention on helping this community by providing support, education and empowering them to be their own advocates. While she does not have a familial connection to HD, she is in awe of the strength and power of this community and knows that we can work together to make big change happen. She is continually learning the impacts of this disease, and how she can play a part in advancing the unmet needs of young people and families impacted by HD.

Jenna Shea

Jenna Shea
Jenna, a teacher in the GTA, is a mother to two little girls and a member of a family deeply affected by Huntington’s Disease (HD).  Over the last several years, Jenna has taken on a fairly active role as a patient advocate for those affected by HD. She is currently a mentor for the Youth Mentorship Program through the Huntington Society of Canada (HSC) and has supported HSC’s efforts to raise awareness by sharing her story of HD at conferences and other educational forums within the Canadian community and internationally. In 2018, Jenna became a member of HD-COPE, a coalition for patient engagement that seeks to incorporate the patient-voice in global therapeutic development efforts for HD. Since joining HD-COPE, she has shared the experiences and needs of those affected by HD with regulators, researchers and industry professionals through her role on various advisory boards with Roche-Genentech, Wave Life Sciences, UniQure, Azevan, Novartis and CHDI. In 2018, Jenna was presented with the “Change-Makers Award” by the Neurological Health Charities of Canada for the care she provides to her mother who lives with HD. In 2019, she joined Clinical Trials Ontario’s ‘College of Lived Experience’. In 2020, she become a member of the Ontario Drug Policy Research Network’s Citizens’ Panel. In 2021, Jenna joined the Huntington Disease Youth Organization (HDYO) as their Mentorship Program Coordinator  for the US in partnership with HDSA.

Jennifer Laurin

Jennifer Laurin

Eric and Jenn live outside Thunder Bay Ontario in the country and have 2 dogs Jasper and Howard.  They love the outdoors, new experiences and spending time with friends and family.

Jennifer works in geriatrics as a personal support worker for over 10 years and Eric works as an engineer in the mining industry. They have been together for over 6 years and have been dealing with HD in Eric's family since very early in their relationship.  

Jennifer has been ultimately supportive through tough events like Eric's Mom getting diagnosed and Eric's own genetic testing before they tried to start a family.  

They have been in the medical stream for IVF for almost 3 years due to the pandemic, finances etc and are almost at the finish line.  They are very open people, please feel free to ask any questions about their journey.  

Kristen Miller

Kristen Miller

Kristen Miller graduated from the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College in 2010. She currently works as a clinical genetic counsellor at North York General Hospital. Kristen specializes in counselling prenatal patients as well as individuals seeking predictive or diagnostic testing for neurodegenerative conditions.  She is currently a member of the Board of Directors for the Canadian Association of Genetic Counsellors, acting as treasurer.

Mackenzie Remillard

Mackenzie Remillard

Mackenzie Remillard is the Manitoba Chapter Youth Coordinator as well as the Youth Engagement Coordinator on the YPAHD Executive. He has also been active in the Youth Mentoring Program and plans on continuing his involvement to fight for those who can’t fight for themselves against HD.

Mandy Urbach

Mandy Urbach

Mandy is a full-time working mom of two boys and a border collie. She is a caregiver to her Mom, peer mentor, HD trial/study participant and advocate. She like to lives an active and healthy lifestyle and enjoys running, bike riding, hiking, camping and anything outside with her friends and family.

HD is something that has been in the family since her Mom’s diagnosis when she was in university.

Being by her Mom’s side as the disease has gone through its stages has been an incredible learning experience, and has allowed her to stay positive and continue to have hope for a future free of Huntington’s Disease.

Natalie Marnica

Natalie Marnica

Natalie Marnica is a certified Yoga Therapist and entrepreneur. She was born into a family with Huntington's Disease and has spent many years caregiving for her family's growing needs.

Natalie has been a passionate advocate in the HD community for the past several years. She has worked with many HD organizations including the HDYO and YPAHD, and is the current President of the Toronto Chapter.

Her experiences give her a unique approach and she's very passionate about helping others. As a person who has managed to reverse caregiver burnout and heal chronic pain, she truly believes that even in dark times there is still hope for a better future.

Stephanie Rees

Stephanie Rees

Stephanie is a volunteer with the Southern Alberta (Calgary) chapter where she has helped organized fundraising and May awareness events as well as speak on different panels. Stephanie joined YPAHD in 2012 (Toronto) and is one of the original youth mentors.

Stephanie comes from a HD affected family and her journey through family planning has taken the full range, including genetic testing, multiple fertility treatments including: PGD, IVF, and IUI and natural conception. Through all this Stephanie and husband Derek just welcomed their third daughter into the world.

Taylor Van Beest

Taylor Van Beest

Taylor Van Beest is an Educational Assistant currently in university working towards a bachelors of education. She would love to be a teacher one day. HD has impacted her life for as long as she can remember, almost a year ago she lost her Mom to HD.

Agenda
13
12:30 PM
to 7:30 PM
Help Desk
1:00 PM
to 2:00 PM
Welcome Session
We look forward to welcoming you to YPAHD Day 2021! In this session, you will learn a little bit about the YPAHD Chapter, the basics of HD and hear about other services HSC offers to youth including the Youth Mentorship Program, and online support groups.
Speakers
2:00 PM
to 3:00 PM
Family Planning Panel
Learn all about the process of family planning from a genetic counsellor, and hear from individuals who have underwent the family planning process.  You will hear from individuals who have experience with IVF, adoption as well as natural conception.
Speakers
2:00 PM
to 3:00 PM
Genetic Testing Panel
Join us for a session on genetic testing.  Hear from a genetic counsellor who will walk you through the genetic testing process from start to finish, as well as two individuals who underwent the process and share their personal experiences.
Speakers
3:00 PM
to 3:30 PM
Ice-Breakers
3:30 PM
to 4:30 PM
Relationships
Relationships can be tricky!  Join us for a presentation from Family Services Worker, Graeme Wood, on some relationship strategies and stick around for our panel discussion with numerous individuals affected by HD and how they navigate the different types of relationships in their lives.
Speakers
4:45 PM
to 5:45 PM
HD Research Update
Join us for an informative research update with Dr. Maiuri and Dr. Harding to learn about the latest clinical trial updates, the root cause of HD, and how you can get involved.
Speakers
5:45 PM
to 6:15 PM
Wrap-Up
Speakers
Back
Description
Speakers
Sponsors