Katie’s advocacy began as an individual venture. Speaking up at physician offices, asking questions, requesting new consultations, second opinions and referrals. Eight medical and mental health professionals until her husband received an accurate diagnosis. She learned to be his voice and speak on behalf of him as she communicated goals of care, values and wishes for dignity and personhood at every stage. The experience was intensely personal, but Katie knew it wasn’t a singular one. Today, Katie has shared her story and impacted public policy through grassroots campaigns, as an advocate on Capitol Hill and the Massachusetts State House, as a Rare Disease Day ambassador, film maker and National Alzheimer’s Project Act Advisory Council Member and Co-Chair. Raising her voice for others has moved her family’s story from one of grief and loss to one of love and purpose.
Read below to see individual campaigns that have featured Katie’s voice and her family’s story.
Cures for the Commonwealth is an educational campaign coordinated by the Massachusetts Biotechnology Council. Through the voices and inspirational stories of patients and advocates, Cures for the Commonwealth highlights Massachusetts’ role as the world-leader in the discovery of new life-changing cures, vaccines and therapies, giving hope to millions of patients and their families struggling with rare and life-threatening illnesses. In 2022, Katie shared her story as an advocate for persons living with a diagnosis of dementia and their families. Listen to Katie’s message of love and purpose through her Cures for the Commonwealth television and radio commercials.
Love Is Out There is the education and awareness campaign that helped connect Katie with the job she has today as the Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders Unit. It helped her raise her voice in the local, state and national community to bring awareness to the impact of young-onset dementia and caregiving. The campaign aimed to empower families with education and information through public speaking engagements, social media efforts, and community events. It was a true grassroots effort that launched the professional phase of Katie’s caregiving journey.
Inspiration for Love Is Out There
On February 28, 2014, Katie spoke at a Rare Disease Day event at the Massachusetts State House in Boston. This event was a powerful one, giving Katie the opportunity to share her family’s experience with the rare disease Frontotemporal Degeneration (FTD) with a wider community audience. As she connected with patients and caregivers from other rare disease communities, Katie realized universal concerns and challenges. Families talked about feelings of isolation and misunderstanding from co-workers, friends and loved ones. They also spoke about acts of kindness and love that helped them survive unimaginable challenges. This is is where Katie saw a need for more exposure.
Click here to see a short video of Boston’s 2014 Rare Disease Day event.
A couple of months later, Katie was going through some books her mother had given her. She came across a copy of the first edition of Chicken Soup for the Soul, a Christmas gift in 1996. inside the front cover, Katie’s mother wrote:
I thought you might appreciate the quotes + stories in this book. Some day you’ll have your own to collect that will give you inspiration. Write them down. We all need to be reminded that love is out there.
It was clear what the name of the campaign should be: Love Is Out There
It was amazing to present to over 200 individuals packed into the Nurses’ Hall at the State House, but Katie felt inspired to want to share her story as wide and far as it would go. She knew she would need help. What started as a campaign with friends and family has turned into a community initiative to reach a national media audience and remind us all about the power of love and kindness. It created the short film, Love Is Out There, that won runner up the 2016 American Academy of Neurology Film Festival and was featured in the first rare disease film festival, DISORDER. Today, Love Is Out There is streaming on the DISORDER Roku Channel.