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Jun
20

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join the alzheimer’s prevention registry and help prevent alzheimer’s

Alzheimer's statistics

Banner Alzheimer's Institute sponsored this post. Opinions are mine. 

Julianne Moore is already receiving Oscar buzz for her role in Still Alice, the upcoming movie based on Lisa Genova’s bestselling novel about a 50-year-old Harvard professor who is diagnosed with early-onset Alzheimer’s disease.

The story is so powerful and sobering, I can’t stop thinking about it.

In fact, I test myself every day on the name and address Alice’s neurologist asks her to remember — that she can’t.

John Black. 42 West Street, Brighton.

Because November is National Alzheimer’s Disease Awareness Month and also National Family Caregivers Month, it seemed like the right time to tell you about some hopeful and innovative research projects taking place to combat Alzheimer’s and how you can get involved.

I recently attended an online briefing by Dr. Jessica Langbaum of Banner Alzheimer’s Institute in Phoenix, which was eye-opening. Try to absorb the enormity of these basic facts:

* Alzheimer’s has reached epidemic proportions, afflicting more than 5.2 Americans and impacting more than 15 million caregivers. By the year 2050, 16 million Americans may suffer from the disease. These numbers are staggering.

* Alzheimer’s is the 6th leading cause of death and the only condition among the top 10 causes that has no cure or treatment.

* Alzheimer’s is a form of dementia. Dementia is an umbrella term – just like cancer. Alzheimer’s falls under that umbrella – just like breast cancer falls under the cancer umbrella.

There is hope, though.

Researchers have discovered that changes in the brain actually start 10 to 20 years BEFORE any symptoms begin to show, which is a monumental finding.

It means that if we can treat people during those silent years, we may actually be able to prevent Alzheimer’s. Scientists’ goal is to stop the disease pathology in its tracks, and they now know there’s a critical period in which to intervene.

To do this, BAI has created the Alzheimer’s Prevention Registry, an online community of people who volunteer to participate in studies. It’s crucial to sign up because eighty percent of research studies fail to meet their recruiting goals, knocking out the possibility of finding answers before the studies are even started.

Here’s how the Alzheimer’s Prevention Registry works:

* Everyone over the age of 18 should sign up. It doesn’t matter what your background is or whether or not you have a history of Alzheimer’s in your family.

* You receive notices about prevention trials and can apply to get involved. You are under no obligation, though, to participate in any studies – ever.

* You don’t have to share your personal health information or any other personal information when you sign up. All studies associated with the Registry are approved by an ethics committee and ensure participants’ privacy and confidentiality.

* The Registry has partnered with top institutions including Columbia University, Johns Hopkins and the Mayo Clinic.

So far, almost 45,000 people have joined the Registry but they need way more in order to find answers. Michael and I just signed up, and I hope you will, too.

Together, we can help make Alzheimer’s just a memory.

Comments

  1. I have joined–yesterday!

  2. I am slowly watching my cousin with Alzheimer’s. She is 95 and in good health except for her memory. It is an awful thing to watch. She is happy in her own world, so I am thankful for that.Thanks for this awareness post, Lois.

  3. This a cause, a condition, and an epidemic that is near and dear to my heart!
    Signed in, signed up, and explored! What a great program with such an important message.

  4. Alzheimer’s is a horrible disease and I hope they find a cure for it soon. I don’t want anyone I love to have to suffer from it.

  5. Just registered, Lois….thanks so much!

  6. I love the video! I work in a nursing home and love our seniors. It is so heartbreaking to watch them suffer but they are loved. Thank you for sharing the message!

  7. Helene Cohen Bludman says:

    I will definitely register. Still Alice was an amazing book. I can’t wait to see the movie.

  8. Definitely registering for this. It’s hard to watch so many of my patients go through the stages of Alzheimer’s, especially with their family involved.

  9. Fascinating. I will certainly look into this further. I know my grandmother suffered, and even more so, my mother suffered when she would visit her and Grandma had no idea who she was or confused her with her cousin. My mother passed before we saw any signs, but I’ve often wondered if she had lived long enough, would she have suffered, too.

  10. Remember all those fears I was trying to let go of a while back on my blog? Yeah…this one is high on that list. Thanks for all the information. Still Alice is one of those books that has stayed with me too… and not just because my Grandmother suffered from Alzheimer’s…the idea of being afflicted at such a young age is unbearable. Ok…off to join.

  11. This is such an important cause. I signed up, oh, months and months ago. Glad to see you sharing it. THIS scares the out of me: * Alzheimer’s is the 6th leading cause of death and the only condition among the top 10 causes that has no cure or treatment.

    Again, thanks for sharing.

  12. I knew someone with Alzheimer’s, it was very sad to watch them lose their memory. Alzheimer’s awareness and prevention are very important subjects.

  13. Alisha Kostiuk says:

    Thank you for sharing. I watched Alzheimer’s completely take my grandfather. It is so devastating.

  14. It is a horrible disease and I truly hope they find a cure soon.

  15. Kimberly Bergeron says:

    I registered! Thanks for getting the word out!

  16. After losing my grandmother to this disease I’m so signing up. Thank you for making people aware.

  17. Those numbers are more than sobering. I just opened the registry in another tab so that I can join. Thanks for spreading the word!

  18. Jennifer Williams says:

    This is a great thing that they are doing. I know a couple that could benefit from this; their mother lives with them. It is rough.

  19. I’m going to sign up right away. We’ve help caretake for two grandparents and the realities are sobering at times. Thanks!

  20. Thanks for raising awareness. I think this is the saddest disease to have. Not being able to remember your life is devastating.

  21. Such an important cause! I’m so glad this is making it easy to sign up and help as well as learn more.

  22. I just found out my Grandma on my dad’s side is suffering from early stages. It’s very sad! Horrible disease. I hope a cure is found!

  23. This is so important. Thanks for sharing! I just had a conversation with some young people and they didn’t know people die from Alzheimers. They just thought you forget things. There is a lot of education to be done!

  24. What I dont think people understand is that this actually does kill people. It’s not just a memory issue. Thanks for the great post.

  25. My husband’s grandmother suffered from Alzheimer’s. She was in such great shape physically. It was so hard on those around her. I’ll definitely look into this registry since there is a heredity link in my husband’s family. 🙁

  26. My husband’s grandfather had Alzheimers. it is so sad what he had to go through – and the family too.

  27. Alzheimer’s runs in our family, and it’s always so terrible to watch loved ones go through it. I’ll definitely be checking out the registry.

  28. Amanda Love says:

    My kids’ grandmother is suffering from it and I know how horrible it is. Here’s hoping that there are a lot of sign ups.

  29. It is really hard to watch someone to go through this but especially hard to be the caregiver. I will have to sign up for this registry. Thank you for this info.

  30. My parents are getting older and this topic is always on my mind. The stats are staggering.

  31. Those numbers are definitely staggering. I don’t think people really understand the impact Alzheimer’s has on somebody and their family until they witness it.

  32. I’ve written a few articles on Alzheimer’s Disease and it’s an eye opener. Some of the things families go through is just heartbreaking. Sounds like a fantastic study. Hopefully a cure can be found.

  33. This is great news to hear they are actively doing something like this. My grandmother had this in her later years and it’s hard on everyone.

  34. I have seen this disease damage families and it must be cured.

  35. Thanks for sharing us this video – I have to let my friend know about this – she has a family history…

  36. This is a terrible disease and it’s heartbreaking when you see your loved-ones go through it. I pray that everyone takes part and that enough money and awareness are raised, so that a cure can be found and nobody in the future will have to go through it.

  37. Such a great post. My hubby’s mom suffered from this and towards the end she did not even recognize him.

  38. I love this. I am praying for a cure or a better treatment program.

  39. My Great Grandmother passed away last year and a few weeks before she died she started into Alzheimer. It was heart breaking to see her that way…

  40. Alzheimer is a terrible disease. I have a great aunt who has it and I feel bad that she cannot recognize anyone or anything.

  41. I’m going to register, too! Such an awful disease. Thanks for sharing.

  42. I really hope they’re able to get together some studies for this horrible disease soon. It’s such a heinous thing.

  43. My grandmother had Alzheimers. I was happy to keep my good memories of her but so miss her most days. Its a nasty disease. Great article.

  44. While I haven’t personally known anyone with Alzheimers, I do have fears that it will affect me some day. I am going to go look more into this registry right now. Thank you for sharing!

  45. I’ve only known one person to have Alzheimer’s, a grandmother of a friend. It was very sad to observe the situation deteriorate… I, too, hope a cure is found soon!

  46. I’m interested in learning more about the disease. I’ll have to look into the Registry

  47. I was told you can prevent it by eating healthy and eliminating bad fats and sugars. Especially juices and non stick pans. So much to learn. Thanks for sharing – my great grandmother had it and its horrible

  48. That’s amazing. To think we might have a chance to fight this thing!

  49. My father in law has been diagnosed. I pray they find the cure so that my husband and children don’t get it. 🙁

  50. This organization is dear to us. We just lost my husband’s grandmother a few weeks ago to Alzheimer’s.

  51. This is one of my biggest fears… thanks for the regristry.

  52. I think this is amazing! What a fantastic idea. I really hope they manage to make headway with dealing with Alzheimer’s in the not too distant future.

  53. This is such a scary disease. Hope they can find a cure.

  54. We lost my grandfather to Alzheimer’s. It was devastating.

  55. wow, symptoms 10 to 20 years earlier? WOW. That is something to really consider.

  56. Wow this article really hit home with me…I can hardly believe those statistics! I feel like we’re the only ones dealing with family members with Alzheimer’s, but it looks like it affects so many people! Thanks for sharing this post.

  57. Rosa Grant says:

    I joined. Thank goodness you published this.

  58. This has a lot of great info. I’m glad they are making progress in learning more about Alzheimer’s in order to treat earlier and hopefully someday prevent and cure. My dad has dementia and watching a loved one go through these diseases is awful! Thanks for sharing.

  59. My grandfather had Alzheimers and it was awful to watch.
    So hard on the entire family.
    I heard that there was a blood test that you could take to see if you were at risk but it’s really expensive.
    Hopefully one day that test will be free and finally they have a cure.

  60. Eliz Frank says:

    Alzheimer’s is one of those insidious diseases that can impact a family in a devastating way. I’ve heard a lot of buzz about Still Alice and will watch it.

  61. I wasn’t aware that that Alzheimer’s is the 6th leading cause of death. I know that it is a serious disease but and not fully understood but, its good to hear that scientists know when there is a critical period. Hopefully there can be more progress made in the future. Thanks for sharing.

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