Dementia effects so many of us and our families. It’s not going anywhere. @laurenmillerrogen co-founder of @wearehfc stopped me dead in my tracks when I heard her say the other day, “The truth is we should all be thinking about this whether it’s in your family history or not. Everyone with a brain is at risk for dementia.” So I’ll be here continuing my efforts for my family and yours. You coming? 🙏🏽💞 #letsgetloud #frontotemporaldementia #ftdawareness
My mission is to raise awareness for frontotemporal dementia. While this is a heavy subject I feel it’s for the greater good. I’m so very grateful to the @todayshow and @hodakotb for having Susan and I on today to educate and raise awareness about FTD while letting our community know that they are not alone.
Please visit my #linkinbio for the full Today Show interview with Hoda 🩵
Shout out to my supportive friends who were holding my hand through it bright and early this morning: @helenchristoni @timchristoni @kristinrunning @laurenkucerak @kucerakandco @theaftd
#worldftdawarenessweek #frontotemporaldementia #endftd
My goal for next year, 2024 is to have California recognize World FTD Awareness Week like they do in the state of New York due to @senatormichellehinchey impactful work. Would you like to see your home state have this resolution too? Let’s go to work! Let’s learn together!
If anyone knows of a California state legislator that would be interested in talking to me, to learn more about FTD and why it’s important to me, please reach out! Comment below or DM me 🙏🏽
And friends, I’ll do my best to keep you updated to let you know what this process looks like. Wish me luck! 🍀
#frontotemporaldementia #worldftdawarenessweek #endftd #californialegislature #californialegislator
I clearly have such a soft spot in my heart for Dr. Bruce Miller and turn into a puddle any time I speak to him. Anyone that makes FTD part of their life’s mission is someone truly special. He’s understanding and he cares, not just about his patients but all living with FTD and their families. And that same feeling is carried through with his extraordinary team at UCSF who I had the honor of meeting this summer in San Francisco. There is hope on the rising at @ucsfmemoryandagingcenter as they work “obsessively” (as they say) to find a cure to #endFTD His full interview is live and in the link in my bio.
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd
In the spirt of our theme for today, I personally need to “celebrate” Maria Kent Beers and Rachael Martinez, the dynamic duo of @remembermepodcast. Their podcast was my first entry point so I could try to make heads or tails of what FTD is from a human side versus the medical professional’s standpoint I was receiving. They were two people that spoke a language I could understand as well as their guests. If you are in this community or want to learn more about FTD please look up their podcast. It’s insightful, educational and real. Keep going ladies. You are making an impact. Their full interview and podcast is in my link in bio 🩵
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd
I’ll be going on The @todayshow with Susan Dickinson, CEO of @theaftd on Monday, the 25th. We will be sitting down with @hodakotb in the 8th hour to talk about frontotemporal dementia for World FTD Awareness Week. I feel this is a big win for our community and I’m grateful to them for allowing us to use their platform to educate the public all for the greater good.
Also, starting this Sunday, the 24th, I’ll be releasing an interview a day on my “Make Time to Connect” YouTube channel to go along with the FTD Awareness theme-of-the-day. I sat down with some brilliant people doing extraordinary things within our community. I can’t wait to share them with you 🩵
Head to the link in my bio where you can subscribe and be notified when a new interview is released.
#frontotemporaldementia #worldftdawarenessweek #endftd #icareaboutftd
Here’s another meaningful and fun way you can get involved to raise awareness for FTD with an AFTD “Food for Thought” campaign.
I’ve teamed up with @nicolepetrie, a fierce FTD advocate, and we are sharing some recipes close to our hearts in one way or another (@inagarten 🥰), while educating the public about FTD and raising funds to support AFTD’s mission. Head to the link in my bio where you will see our full Food for Thought videos on our Classy page. We hope you’ll be inspired to have some fun and set up your own. As long as it involves food and FTD education, you’re golden! Food for Thought is a grassroots fundraising and awareness campaign focusing on food and FTD education. Held September 24-October 8, 2023, Food for Thought encompasses World FTD Awareness Week. During this time, people across the world “Take Time with Friends and Family. Take Action.” @theaftd
#EndFTD #FoodForThought #worldftdawarenessweek #FrontotemporalDegeneration, #FTDAwareness
Welcome to World FTD Awareness Week 2023. I’m passionate about raising awareness for this disease called frontotemporal dementia that has entered into our family’s world. My hope is you will learn and take away something new and helpful from this week. I’m here to let the next family know that you are not alone and that there is understanding and hope within our strong FTD community 🩵
#endFTD #worldftdawarenessweek #icareaboutftd #wecareaboutftd
New York you were good for my mind, body and soul 🩵🗽 @aryehlappin @todayshow @maketimewellness @helenchristoni @timchristoni @remembermepodcast @wwd @sloomooinstitute #maketime ✅
Love is eternal ♾️
#frontotemporaldementia #endftd #worldftdawarenessweek
Please set some time aside for yourself today. Commit to making this a practice for your own health and wellness. Tell me what you’ll be making time for below ⬇️
Head to the link in my bio to watch Teepa Snow’s full interview for Day 2 of World FTD Awareness Week 🩵 @teepasnows_pac
#worldftdawarenessweek #frontotemporaldementia #caregiving #icareaboutftd #wecareaboutftd #endftd
Frontotemporal dementia is the most common form of dementia under the age of 60. FTD can occur anytime from someone’s 20s to their 60s.
#worldftdweek #frontotemporaldementia #endftd
FTD whispers and it’s very confusing in the early stages which is why it gets overlooked and written off by some doctors time and time again. As family members or friends we feel something, we sense something is not right and you can not put your finger on it. This is when we need to step in and advocate strongly for our loved ones to our medical professionals. I’ve added @theaftd’s diagnostic checklist (link in bio) that you can take into your doctors office if you have concerns. The theme for today, day 7 is research, focused on work to better understand, diagnose, treat, cure, and ultimately prevent every form of FTD. And for such a hopeful topic, I’m grateful to have spoken to Dr. Bruce Miller, who is known as a global pioneer in FTD research. His full interview is in the link in my bio.
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd
The theme for Day 2 of World FTD Awareness Week is Support: Reach out to a caregiver or someone with FTD with a concrete form of support. @teepasnows_pac tells us ways our friends and family can help and so much more. Head to my link in bio to watch her full interview.
#worldftdawarenessweek #frontotemporaldementia #caregiving #icareaboutftd #wecareaboutftd #endftd @theaftd @worldftdunited
The theme for today, the final day of World FTD Awareness Week is “Celebrate.” Today we’ll be focused on honoring and remembering loved ones with FTD, as well as celebrating others who’ve been there for you on your own journey.
And in that spirit, personally, I need to “celebrate” Maria Kent Beers and Rachael Martinez, the dynamic duo of @remembermepodcast. Their podcast was my first entry point so I could try to make heads or tails of what FTD is from a human side versus the medical professional’s standpoint I was receiving. They were two people that spoke a language I could understand as well as their guests. If you are in this community or want to learn more about FTD please look up their podcast. It’s insightful, educational and real. Keep going ladies. You are making an impact. Their full interview and podcast is in my link in bio 🩵
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd
Meet @nicolepetrie who is a model, activist, care partner to her mother Cheryl, vegan, and a strong AFTD volunteer in multiple contexts. Today on my YouTube channel Nicole shares how it feels to be a young care partner. I’m so moved by Nicole in many ways. Her resilience is nothing but inspiring to me. Please head to the link in my bio to see her full interview.
#worldftdawarenessweek #frontotemporaldementia #caregiving #icareaboutftd #wecareaboutftd #endftd
We are all in this together. Alzheimer’s research is vital but so is research into lesser known forms of dementia.
@michellehincheynysenate @theaftd
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd
Every theme-of-the-day was different for World FTD Awareness Week. But the common thread I heard over and over again in all 8 interviews—How important it is for us care partners to make time for ourselves. It’s not being selfish but absolutely vital 🩵
@remembermepodcast #carepartner #caregiving #worldftdawarenessweek #endftd
Dr. Bruce Miller is a leading expert in FTD; he is a distinguished professor of Neurology at the University of California, San Francisco, and leader of the Global Brain Health Initiative.
Not all physicians know about FTD, so it is often misdiagnosed or not diagnosed at all. FTD symptoms are not always listed on patient screeners, so The AFTD developed checklists to help identify red flags for the two most common types of FTD – behavioral variant FTD (bvFTD) and primary progressive aphasia (PPA) that you can bring in to your doctors office. You will find @theaftd checklist in my bio.
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd
I’m honored to have interviewed New York Senator Michelle Hinchey, from the 41st District. I’m so in awe by her dynamic work that she has done in her home state to bring FTD awareness to the forefront. You should know that World FTD Awareness Week is officially recognized in the state of New York due to her. She has influenced me greatly to roll up my sleeves and see if I can get FTD Awareness Week recognized in our family’s home for next year. I hope she will inspire you as well.
Today’s theme is Educate: Tell friends, neighbors, & health professionals about the unique symptoms and challenges of FTD, and encourage them to seek more information.
Head to the link in my bio where you’ll be able to watch @michellehincheynysenate full interview on my YouTube channel, Make Time to Connect.
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #endftd
I really have nothing else to add here. Except, thank you @lindejlee for being a passionate advocate. I learn so much from you 🩵
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd
Today is Day 1 of World FTD Awareness Week and the call-to-action is Self-care: Take steps to support your own health.
This is important whether you’re a care partner, someone carrying a genetic variant that causes FTD, or someone living with FTD today.
Head to the link in my bio to watch Dr. Morhardt’s full interview on my YouTube channel, Make Time to Connect.
#worldftdawarenessweek #frontotemporaldementia #caregiving #icareaboutftd #wecareaboutftd #endftd
The theme for today is focused on advocacy, focused on different ways you can get your perspective out to the world, to make change to benefit families facing FTD. Please meet Linde Lee. Her family has a history with FTD, something which deeply informs her perspective and passion as an advocate, on behalf of her, her sisters and the next generation. Please head to the link in my bio to watch @lindejlee full interview 🩵
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd @theaftd @worldftdunited
The theme for today focuses on volunteering, on ways you can take action by working with a FTD or dementia-focused organization in your part of the world. If you can’t find one near you, it can also be effective to take a simple action on your own to raise awareness of this disease. Diana and Sandra Gonzalez-Morett are sisters who are doing so much, each in different ways. Together, they are taking action, getting the FTD story out there while making a difference in the lives of others impacted by this devastating form of dementia. Head to my link in my bio to hear @dianalaurengm and @sandygomo story.
@pedacitodecarnefilm @theaftd
#worldftdawarenessweek #frontotemporaldementia #icareaboutftd #wecareaboutftd #endftd
