Judy Johanson serves as an inspiration to any person faced with a difficult reality, because she turned hers on its head.
When Judy’s husband Steve was diagnosed with younger-onset (also known as early-onset) Alzheimer’s disease in 2011, she reached out to the Alzheimer’s Association for guidance. Finding the resources and help that she needed, Judy got even more involved. Since 2012, Judy has participated in the summer solstice event The Longest Day alongside family and friends, an event that becomes larger every year.
This year, the family will be celebrating the day without Steve. Judy was at his side as he passed away in April 2018, a moment of peace and freedom.
Judy and Steve were a perfect match; so were the Johanson family and the Association. “My number one reason for volunteering is because I felt like I had to give something back to the Alzheimer’s Association for everything they’ve done for me and my family,” Judy says. “We are full-mission recipients: we’ve received care and support as well as information about the vital importance of participating in research through clinical trials.”
Today, Judy embodies the spirit of volunteerism. In addition to The Longest Day, Judy has advocated on Capitol Hill while attending Advocacy Forum with Steve, spoken at a variety of events through the Massachusetts/New Hampshire Chapter and shared her family’s story at the pre-marathon dinner with 'Team ENDALZ' ALZ Stars runners in the Boston Marathon. “We all know that Alzheimer’s is a marathon of its own,” Judy says. “I want to be there for all the people who keep fighting, as they have been for me.”
Judy knows that volunteers give faces – and hearts – to this cause. “Through experiences offered to us through the Alzheimer’s Association, we have been afforded rich and organic opportunities of connecting with people from across the country who have reached out to us to extend a hand of hope. Volunteers are authentic. We can stand behind an executive and give credibility to this organization that deserves our time and our dollars because we’ve seen the benefits firsthand.”
Volunteers are integral to the mission of the Alzheimer’s Association, and Judy says she has gained something else as well. “Giving back was important for us as a family as we went on this journey that is Alzheimer’s. My husband could no longer work. Travel became more challenging, so the trips we could take became limited. There are so many parameters that come along with this disease; volunteering has helped us all defy the gravity of this diagnosis.” Through her extensive volunteer work, Judy has found a whole new power and purpose.
“I hit the lottery of love with my husband, and our kids and grandkids show their love for him every June. They have learned the value of leadership through The Longest Day.” And the benefits extend far beyond just Judy. What started as a single lemonade stand has become a day where the entire town turns purple in honor of Steve and others living with Alzheimer’s and dementia. Families all over town ask how they can get involved and join the cause.
“My grandkids aren’t going to climb physical mountains with their beloved Gramps Steve, but they have walked every step of the Alzheimer’s mountain with us. We have all been offered a profound view of more than just the top of a mountain – we have been given proof that our efforts have truly made a difference. When you give of yourself, grace comes back tenfold.”
The Longest Day