By Josh Martin
Tara Johnson-Ouellette first discovered the Huntington Society of Canada 23 years ago, when her mother was diagnosed with Huntington disease. The Society offered crucial support as Tara looked after her mother and later, when she decided to undergo genetic testing.
Tara has returned that support, as a committed volunteer, Board member and donor. Now, she is ensuring her commitment continues long after she is gone by including HSC as a beneficiary in her estate planning.
For Tara, leaving a gift to the Society in her will offers a powerful way to keep her mother’s memory alive. It also provides a way to help others affected by HD: members of her own family, as well as the hundreds of families she has gotten to know in Calgary and across the country.
She knows her gift will be put to good use. During her six-year tenure on the HSC’s Board of Directors, Tara learned firsthand how every dollar makes a difference. She has seen how donations have benefited families in their day-to-day lives – by hiring more social workers, funding HSC’s youth chapter programs, supporting advocacy efforts around genetic fairness and more. “It’s pretty outstanding,” she says, “but there’s still a lot of need.”
She has also seen how donations are supporting game-changing HD research and how a shortfall in funding can leave potential breakthroughs on the table. For Tara, a legacy gift is a wonderful way to help address those needs beyond her own lifetime.
Although she doesn’t carry the mutant HD gene, being part of the HD community has taught her the importance of making the most out of life. For her, that includes having a positive impact on the world after she dies. “Leaving something in your will creates your legacy,” she says.
Many people shy away from the topic of estate planning. They don’t feel comfortable thinking about death, or they worry about complicated paperwork and steep fees. However, “it’s not as intimidating as you might think,” says Tara. “Your lawyer, financial advisor and insurance agent can all help you develop a giving strategy tailored to the specific needs of you and your family.”
Today, Tara continues to support the Society as a monthly donor and an active member of the Southern Alberta Chapter. As a legacy donor, she is also helping to transform the face of HD tomorrow, and she invites others to contribute to that transformation.
“Whether you have the disease, carry the gene or look after someone who is affected, HD shapes you,” she says. “Everybody has the decision to make that either a positive or a negative,” she explains. “For us, we’ve made it a positive.”
You can too.
For more information, contact the Huntington Society of Canada at 1-800-998-7398 ext 125 or via email at jhoffman@huntingtonsociety.ca