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@katiebrandt6
We Will Be Back - Faith in FTD
We Will Be Back – Faith in FTD
As the Director of Caregiver Support Services and Public Relations for the MGH Frontotemporal Disorders Unit, it is my happy job to coordinate community events and fundraisers. A family-friendly bowling event, an education day, or even a summer concert for research participants and their families.
I love event planning. I imagine the event from the attendee’s eye and work to make it is as…
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Feeling Sure
The summer that my son, Noah, was two, my husband, Mike, and Noah were the same. When I say that, I mean that they were entertained by many of the same things and had a similar level of skills. Noah was much more verbal than Mike. At the age of two, he had well over 200 words. Because of Frontotemporal Degeneration (FTD), a progressive neurological disorder that caused dementia,…
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Impossible
“They’re shouting for you,” she said with a smile. “But I could never have done it,” he objected, “without everyone else’s help.”
“That may be true,” said Reason gravely, “but you had the courage to try; and what you can do is often simply a matter of what you will do.”
“That’s why,” said Azaz, “there as one very important thing about your quest that we couldn’t discuss until you returned.”
“I…
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After Frontotemporal Degeneration made her a widow, Katie Brandt fought back by organizing others and becoming a community fundraiser for MGH research.
MassGeneral Magazine is a publication of the Massachusetts General Hospital Development Office. The FALL/WINTER 2015 issue profiles my story as a community fundraiser for The MGH Frontotemporal Disorders Unit. If you have a connection to MGH and want to host a local fundraiser or launch an online fundraising campaign, MGH can help! Click the link above to learn more and thank you for reading my story!
One month after our amazing, incredible, heart burstingly beautiful inaugural gala to benefit The Frontotemporal Disorders Unit at the Boston Harbor Hotel, and only days before Thanksgiving, I am thinking a lot about gratitude. Gratitude for every pledge of support, every word of encouragement and every congratulatory hug. Standing at the podium with Dr. Dickerson, I was privileged to a humbling view looking out at a room full of friends and colleagues raising paddles high in the air, banners of hope that the cure of tomorrow is not so far away.
The gala felt big. Bigger than big. It felt epic. For me, it was a turning point in our movement. A turning point dressed up in tuxedos and sequins with big band music, glasses of champagne and laughter on the dance floor. Brain images sprinkled with sparkles and research data punctuated by rounds of applause. It was a night where FTD stayed in the shadows and our community was in the spotlight. I carried that spotlight home with me and tried to tell Noah about the magic of the night. He listened for a few moments, but I felt pretty sure that my recounting was unremarkable.
Until yesterday.
Noah and I were alone in the car and headed to the grocery store with a mission to find peppermint ice cream. He always asks me questions while I drive, so I didn’t think too much of it when his little voice piped over the radio “Mom, how do you get famous?” I started talking about athletes and movie stars who worked hard to have important careers when he interrupted me, “Well, you are going to be famous.” That got my attention.
“Noah, what do you mean?” I asked. “Because of FTD” he replied. “You are working so hard. You planned a gala. You made a TV show. You were on the radio. That makes people famous.” By all accounts, Noah was right. I did make a short film this past spring with four students from Boston University (over 1,000 YouTube views!) and Noah and I were interviewed on our Hometown AM radio station before Rare Disease Day last February (he loved pushing all the console buttons and later telling his friends that he was “on air.”) While I appreciate Noah’s belief that I will one day find Kardashian-level stardom, it was his acknowledgement of my hard work that felt like my very own academy award.
I am thankful for every donor who supported our gala through sponsorships, online donations and gifts that are still coming in. I am humbled by the dedication of so many scientists, researchers and clinicians who care for our FTD community. Mostly, I am grateful for the movement towards a cure and for the hard work of so many today to make a difference for the families of tomorrow.
With love and appreciation, Happy Thanksgiving.
Mass General Magazine 2015-09-27: Katie Brandt and son Noah-FTD advocate: No time-limit, non-exclusive use for MGH’s internal publications, PR, web-site use, and gifts (see agreement between Photographer and MGH Development for full details). Not for: Advertising, other Partner institutions ,VincentMemorial Hospital, etc, any other outside publications or institutions, media, or any other usage without written permission of Joshua Touster. Copyright 2015 Joshua Touster
Mass General Magazine 2015-09-27: Katie Brandt and son Noah-FTD advocate: No time-limit, non-exclusive use for MGH’s internal publications, PR, web-site use, and gifts (see agreement between Photographer and MGH Development for full details). Not for: Advertising, other Partner institutions ,VincentMemorial Hospital, etc, any other outside publications or institutions, media, or any other usage without written permission of Joshua Touster. Copyright 2015 Joshua Touster
Mass General Magazine 2015-09-27: Katie Brandt and son Noah-FTD advocate: No time-limit, non-exclusive use for MGH’s internal publications, PR, web-site use, and gifts (see agreement between Photographer and MGH Development for full details). Not for: Advertising, other Partner institutions ,VincentMemorial Hospital, etc, any other outside publications or institutions, media, or any other usage without written permission of Joshua Touster. Copyright 2015 Joshua Touster
Thankful One month after our amazing, incredible, heart burstingly beautiful inaugural gala to benefit The Frontotemporal Disorders Unit at the Boston Harbor Hotel, and only days before Thanksgiving, I am thinking a lot about gratitude.
Something Rare
On February 22nd, our family’s journey with the rare disease Frontotemporal Degeneration (FTD) was featured in The Boston Globe, written beautifully by reporter Bella English. The timing of this article was serendipitous as we are on the precipice of International Rare Disease Day on February 28th. Even more extraordinary was the act of kindness that occurred when Noah and I went to pick up our…
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life of 'pie'
life of ‘pie’
katiedianebrandt:
A beautiful example of embracing the sweet memories after a goodbye that came much too early. Thank you for sharing your family’s story Brianna!
Originally posted on briannafrommontana:
When I was about 15 years old my dad started baking pies. Not just any pies. Masterful, mouthwatering pies. Apple raspberry, blueberry lemon meringue, caramel peach, and my personal favorite,…
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Power Play
On November 13th I had the privilege of speaking at From Care to Cure, an FTD Education Event for caregivers presented by the Frontotemporal Disorders (FTD) Unit at Massachusetts General Hospital. I was also one of the conference organizers. The day encompassed scientific presentations, workshops to manage the practical aspects of caring for a loved one with FTD, and an opportunity for caregivers…
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Memories Impact How Alzheimer’s Patients Think, Feel, and Act
Memories Impact How Alzheimer’s Patients Think, Feel and Act Alzheimer’s caregivers can have a profound influence on the emotional state of individuals… - Bob DeMarco - Google+
Thank You
Yesterday, I went to the post office to mail two donations. The result of generosity from my community and the fruits of back to back fundraisers. The first was a wild night at Chili Head BBQ in West Bridgewater. Outrageous entrees, decadent beer and inspired music met the crowd ready for a fun night out. The second was a packed house at Crispi’s Italian Restaurant in Bridgewater. Good…
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Genevieve takes us from science to fashion and exposes how awareness for rare disease is everywhere! #ellenandkatieRDD2015 #EllenforMike
Rare Disease Research Embodied in Science-Fashion Collaboration, Exquisitely I love the way that Genevieve finds unique and amazing ways that scientists, and others, are working to bring awareness to rare disease! #ellenandkatieRDD2015 #EllenforMike
Going for it! ...because love is out there.
Going for it! …because love is out there.
katiedianebrandt:
A big thank you to Genevieve Wanucha for blogging about my campaign and being a big support through my FTD journey. Dr. Brad Dickerson connected us years ago when we were both caring for our loved ones with FTD. Today we work together – she as the Staff Science Writer and me as a Consultant – for the Frontotemporal Disorders Unit at Massachusetts General Hospital. We are using…
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A beautiful post from a beautiful friend! Genevieve Wanuncha is the Massachusetts General Hospital Frontotemporal Disorders Unit Staff Science Writer and a fellow warrior in the realm of FTD caregiving. Her blog posts are educational and inspiring. I am so appreciative of all her support and creativity towards my campaign and the greater movement for care and a cure for FTD patients. #ellenandkatieRDD2015
The Alzheimer’s Epidemic Hits Women Hardest — And In The Workplace
A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, Source: www.forbes.com See on Scoop.it - Alzheimer’s Dementia
Date Night
My first date with my husband Mike had the potential to rate pretty high on the romance scale for two college freshmen. It was a cool night in September when he walked over to my dorm to pick me up. The lobby was busy with girls coming back from the dining hall, classes or the gym, talking and swinging lanyards with ID cards and keys. Noisy study groups competed with the hum from the laundry room…
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For as long as I can remember, I was interested in my parents’ love story. I wanted to know how they met, who liked who first, when my mother knew my father was “the one.” I always felt like that was the real beginning to our family’s story and I enjoyed listening to Mom retell it over and over.
My parents met at a “mixer” on campus at Stonehill College. My mother was an English major there and…
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