A free teleconference series offered by UsAgainstAlzheimer's Network covering a wide range of topics with leaders in the Alzheimer's community.
Journalist, radio talk show host, and author Diane Rehm spoke with George Vradenburg on this Alzheimer’s Talks about her new book, On My Own, which is a deeply personal, profoundly moving, and incredibly honest book about her life before and after her husband’s death with Parkinson’s disease.
Key highlights from the call:
It is important to discuss end-of-life wishes.
Diane had discussed end of life wishes with her husband, John, throughout their marriage. John Rehm’s parents both took their own lives after dealing with pain and illness. Death was “simply part of the conversation,” she said, and the whole family knew that death with dignity was what John Rehm had always wanted for himself.
She was frustrated when John decided he could no longer care for himself and was ready to die, that the only thing he could do was to stop eating, drinking, and taking medication, which lasted ten days.
She believes that choice at the end of life is perhaps the most important.
“I believe in choice,” said Rehm, “and choice at the end of life is equally as important to me as any other choice in my life, perhaps the most important choice.” She would like people to be supported in whatever choice a person makes, whether it is palliative care, medical treatment, or ending your life, as long as a person has the right to make his or her own choice. We also discussed the challenges with choice when someone has Alzheimer’s.
Diane Rehm will be leaving NPR at the end of the year. She believes that John’s death has given her a final gift – the impetus to carry on life in a new and vital way. She talked about her commitment to speaking out about her own experiences, her belief in the importance of choice at the end of life, and also her desire to continuing her work with UsAgainstAlzheimer’s – including appearing in readings of Trish Vradenburg’s play, Surviving Grace.
Thank you to Diane Rehm for sharing her story and speaking candidly about her experiences. Make sure to pick up a copy of her new book, and if you missed the talk – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
We look forward to having you join the next Alzheimer’s Talks on Monday, June 13, 2016, at 4 p.m. Eastern with Dr. Eric Reiman, the Executive Director at Banner Alzheimer’s Institute, who will discuss two important trials currently underway. Click here to register.
A new analysis released by ResearchersAgainstAlzheimer’s shows that 17 new Alzheimer’s drugs could be on the market within the next five years. Drew Holzapfel, Director of ResearchersAgainstAlzheimer’s, and Dr. David Morgan, CEO of the Byrd Alzheimer’s Institute and founding member of ResearchersAgainstAlzheimer’s joined us for this month’s Alzheimer’s Talks to discuss the study, ‘Will the Next Five Years Witness an Innovation Wave in Medicines for Alzheimer’s?”
Key highlights from the call:
Hope is on the horizon.
A first-of-its-kind analysis of Phase 3 clinical trials (the final stage of drug development) shows that 17 Alzheimer’s drugs could be on the market within the next five years. No new Alzheimer’s drug has been introduced since 2003, so we are cautiously optimistic for the future.
Our health care system needs to be prepared.
With new drugs will come new requirements: doctors need to better recognize and diagnose Alzheimer’s. We’ll need more trained physicians and the infrastructure to diagnose the disease and to administer new medicines.
Access and advocacy are crucial.
Ensuring broad access to new medications will require making them affordable through innovation as well as changes to Medicare and other health payment systems. It is also important to continue to advocate for increased research funding to accelerate the search for a cure.
Thank you to Dr. David Morgan and Drew Holzapfel for summarizing this analysis and answering questions. If you missed the talk – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
Dr. Lawrence Friedhoff from Axovant Sciences was our guest for this Alzheimer’s Talks. Dr. Friedhoff has worked in pharmaceutical research and development for more than thirty years. He has led teams that developed and obtained approval for six new drugs, including donepezil (commonly known as Aricept) and he is also the author of the book New Drugs: An Insider’s Guide to the FDA Approval Process for Scientists, Investors, and Patients. Dr. Friedhoff described the clinical trial called MINDSET, which is currently enrolling participants.
Key highlights from the call:
MINDSET is a new trial that is testing a promising new drug
MINDSET is a Phase-III clinical study evaluating whether an investigational Alzheimer’s treatment known as RVT-101 could improve cognition and ability to perform daily living tasks for those with mild-to-moderate Alzheimer’s disease. RVT-101 works by raising levels of an important neurotransmitter, acetylcholine, in the brain, and is being developed as a once-daily oral pill. The MINDSET study is currently enrolling patients. To find out more, visit www.alzheimersglobalstudy.com or call 1-855-241-6288.
Clinical trials are the key to drug development
Because scientists still don’t understand the cause of Alzheimer’s disease, there are not good models in test tubes or animals, so clinical trials with human subjects are the best way to see if drugs can help or not. By participating you receive access to potential new medications, study-related medical care from expert doctors, and contribute to research that may help future generations.
Hope in future, practicality at present
Though there may someday be one single medicine to treat Alzheimer’s, Dr. Friedhoff drew comparisons between the treatment for Alzheimer’s and the treatment for other serious illnesses—once acutely fatal, now manageable—that involves combination therapy with multiple drugs, and said that in the shorter term, multiple drugs may be a way to bring benefit to people afflicted with Alzheimer’s.
Thank you to Dr. Lawrence Friedhoff from Axovant for describing his research and answering questions, both about the MINDSET trial and Alzheimer’s in general. If you missed the talk – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.
Check out the discussion Storified!
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During our January Alzheimer’s Talks, we were joined by Dan Gasby – the partner in marriage and business with B. Smith, the incredible woman who broke down barriers as a restaurant owner and model and is now facing the challenge of her life: Alzheimer’s disease. The two are doing all they can to make a difference in the fight for a cure.
Dan and B. just published a heartfelt book, Before I Forget: Love, Hope, Help and Acceptance in Our Fight Against Alzheimer’s, and they are sharing their story to let people know that if B. Smith could get Alzheimer’s, it can happen to anyone. Click here to read our co-founder Trish Vradenburg’s wonderful review of the book.
UPDATE: Dan and B.'s New York Times bestselling book is now available in paperback.
Key highlights from our conversation with Dan Gasby:
Caregiving: “It’s gut wrenching every day”
Dan shared with us the experience of being a male caregiver and how he constantly has to remind himself when he is upset or frustrated that “it’s the disease.” Some strategies he has to avoid burnout include working out, reading, meditating and going for walks with the couple’s dogs. Still, he says watching such an amazing woman decline is “gut wrenching every day.”
Increasing clinical trial participation – particularly for African-Americans
Medicines work differently for men and women and different races – so we need a representative sample in trials in order to find a drug that works for everyone. Dan talked about the problem with African Americans not trusting the medical system, the safeguards in place now and why he believes this is a 21st-century civil rights issue. We have to participate so that our children and our children’s children won’t have to worry about Alzheimer’s.
One way that anyone can help accelerate innovative medicines is by signing up for the Brain Health Registry, where you can play brain games online to help researchers and get more information on clinical trials. Click here to sign up for the Brain Health Registry.
We have bright minds working on finding a cure, but they need more funds to try more strategies. The government needs to be behind this effort in conjunction with private industry, and Congress can help speed research by increasing the amount of money spent on research funding. Dan encouraged all of us to be part of the solution by voting, writing your elected officials and being ambassadors to motivate people to make a difference.
Thank you to Axovant for sponsoring this call. Axovant is currently enrolling a clinical trial called MINDSET and actively seeking participants, particularly African Americans. We are so grateful for their contribution to bring you this fascinating conversation.
Thank you to Dan Gasby for this honest and informative discussion. If you missed the talk – or if you’d like to hear it again – you can listen to an audio playback, read the transcript of our conversation, and check out the Storify.
Stem cells, cells that have the ability to develop into different cell types, hold great promise for the treatment and prevention of Alzheimer’s disease. Dr. Larry Goldstein – Distinguished Professor in the Department of Cellular and Molecular Medicine at University of California, San Diego; Director of the UC San Diego Stem Cell Program; Director of the Sanford Stem Cell Clinical Center; and Scientific Director of the Sanford Consortium for Regenerative Medicine – joined us for November’s Alzheimer’s Talks. He described some of the groundbreaking research being done and offered a glimpse of potential future therapies and treatments for Alzheimer’s disease using stem cell technology.
Key highlights from the call:
Stem cell technology is potentially disruptive in the fight against Alzheimer’s. Stem cells provide new ways to attack the problem, and there’s hope that one day they can replace lost brain cells.
Two methods are being studied with stem cells. One is to use stem cells to replace or repair lost or damaged brain cells. The other is to use stems cells to create brain cells in the lab, sometimes referred to as ‘Alzheimer’s in a dish,’ in order to study the process of Alzheimer’s disease as well as develop and test drugs.
It’s important to try a variety of approaches. Dr. Goldstein is hopeful, as there are many promising leads. To get a cure as fast as possible, we need to try many different approaches. It is also possible that successes in research for other diseases could help inform the research into Alzheimer’s disease.
Thank you to everyone who has donated to continue the Alzheimer’s Talks teleconference series, including the Zickler Family Foundation, Karen and Chris Segal, Tom Pheasant and the Richard and Ruth Lavine Family Foundation. We are so grateful for these contributions, along with the many smaller contributions, so that we can continue to bring you the latest in Alzheimer’s research from leading scientists.
Thank you to Dr. Larry Goldstein for describing his research and answering questions. If you missed the talk – or if you’d like to hear it again – you can listen to an audio playback or read the transcript of our conversation.