Dance 2 End Alzheimer’s Houston Chapter

Speakers: Christine Roe, Board Member of Dance 2 End Alzheimer's Houston Chapter. Jordan Maedgen, Founder of Dance 2 End Alzheimers, Houston Chapter. Meredith Winczewski, Board Member of Dance 2 End Alzheimer's Houston Chapter. Robin Schlosser, Board Member of Dance 2 End Alzheimer's Houston Chapter

Jordan Maedgen: My inspiration for this charity and our committee goal is to bring awareness to our community about the devastation that frontotemporal dementia and Alzheimer's can inflict on a family. Plus share the hope that new discoveries are on the horizon. Our committee was formed as we began to share our strikingly similar experiences and realize this disease is not so rare. I learned of others loved ones demonstrating wild and erratic behaviors, experiencing depression and isolation and the additional sad but common burden it places on a spouse, family and children. The emotional and financial stress of caring for a loved one with FTD and Alzheimer's can be detrimental. The general definition of early onset Alzheimer's is onset before age 65. However, my mom died at age 64 after living with it for 14 years. The textbook data needs to be updated. My mom began displaying symptoms of brain disease at age 49. She began to stutter and lose her words in simple conversations. She slowly lost her ability to write and type and ultimately became unintelligible. Her decline was not only a concerning social and functional detriment but also a major liability in her dental practice. At an age, most of us would consider to be in our prime, my mom became stripped of her professional social and family caregiving roles. To add salt to the wound, my sweet sister-in-law is now experiencing this with her own mother. And for a second time, my brother is walking this journey before he is 40 years old. I have dug deep into the research and met with several doctors who all have a goal of learning how FTD and Alzheimer's begins and what can be done to prevent treat and cure it. I was inspired to join a clinical trial. I have had two different brain scans and have had what seems like gallons of blood drawn. I am not just raising money, but I'm doing anything I personally can to provide clues for additional answers. What I have learned is that once symptoms are outwardly apparent, the underlying disease has been discreetly active for about 10 years. For me and based on my mom's symptoms, that is right now. Am I living my daily life as my brain is slowly deteriorating? How can I stop and prevent this from happening?

Meredith Winczewski: According to the Alzheimer's Association, there are 6.7 million Americans living with Alzheimer's. This number is bigger than the city of Houston. There are also about 16 million caregivers and of those caregivers, one in three say that their health has declined because of their responsibilities caring for those with Alzheimer's.

Christine Roe: Good evening. My name is Christine Roe and I lost my Aunt Linda to FTD last summer. My aunt's behavior started to change when she was right around my age, which is in her mid forties. When brain disease hits a family member at such a young age, it creates incredibly unique and complicated consequences for the family. It's been so rewarding to partner with these amazing women who share similar stories. Our hope is to channel our pain and loss into research and a cure. We thank you all for coming tonight. Have fun.

Meredith Winczewski: Hi, I'm Meredith Winczewski and I have significantly been impacted by Alzheimer's. My grandmother, Meme, passed away about five years ago and then a few weeks ago, my mom passed away from Alzheimer's, and in May of this year, my dad also passed away. I truly believe that my father being my mom's caretaker was such an emotional and physical stressor that it shortened my dad's life. So Alzheimer's has significantly impacted me, my sister, my family, and it is really such a cruel disease and, we hope that we can one day find a cure so nobody has to go through this.

Jordan Maedgen: The funds raised for this event will be donated to the Nantz National Alzheimer's Center. The NNAC is here in Houston and housed in the Houston Methodist Hospital. It's the only center in Texas that is in collaboration with the Mayo Clinic, Johns Hopkins, Columbia University, Northwestern University, and the Cleveland Clinic, plus a few other powerhouse facilities. That means that as they all independently research and treat patients, they are sharing their findings and working as a cohesive unit to find a cure. In true Texas form, The Nantz Center has the largest number of patients in their study and are one of the top contributors to the database. They are also leading the charge with the first ever clinical trial for FTD. What a gift to have them here in our hometown and speaking to Dr. Masdeu do at NNAC, he expressed that they do receive some funding and grants from the National Institute of Health. However, the NIH likes to fund what is safe. He questioned how can we improve if we only test what we currently know. He shared a story that several years ago the NIH would not fund research for the impacts of brain inflammation to brain disease. Fast forward several years, and brain inflammation is one of the only things researchers have indeed linked to dementia. If one can reduce brain inflammation in amyloid plaque, a patient will likely have delayed outward expressions of the disease. The research for this discovery was from private funding. Dr. Masdeu shared that genetic testing and highly reliable blood tests are in the near future. Armed with that information and a shift in healthier lifestyles, prevention and or deterrence of symptoms feels obtainable. However, private funding is the key for innovative research. To provide groundbreaking research, they need more freedom with the money that they are provided. We are here to support them in that. We feel so fortunate to live in Houston with premier medical teams and the ability to partner with doctors and medical researchers that are part of a national movement to find a cure for this highly debilitating brain disease. Although we as a committee are here because of our loved ones and what they suffered. This research and funding is for us. It's for us. It's for our friends, our spouses and our children. We want everyone to be protected from this heartache we experienced.

Robin Schlosser: Good evening. I'm Robin Schlosser and on behalf of the Dance 2 Alzheimer's Houston Texas Board, we sincerely thank you for coming tonight. As you have heard Alzheimer's and FTD affect not only in the individual diagnosed but their entire family and community. Help us put an end to this cruel disease. We would be so honored to have any contributions you feel inclined to give this evening. Throughout the room, you will find Dance 2 End Alzheimer's Zelle QR codes. To donate, open your banking app on your phone and then scan the QR code. We also have a box at the check in table for cash, checks or credit card donations. We are so glad you are here for our inaugural dance party to end Alzheimer's. By funding the Nantz National Alzheimer's Center associated with the neurologist working here at Houston Methodist Hospital, we know that one day we will find a cure for this horrific disease and our memories will not be forgotten. Now, let's get back to the party.