Love Is Out There

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:

Katie,

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.

Love, Mom

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.

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