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Posts Tagged ‘National Alzheimer’s Project Act’

Dementia Research & NAPA Speeches on Alzheimer’s Speaks Radio 8/26

Dementia Research &

NAPA Speeches

Alzheimer’s Speaks Radio

Tuesday 8/26

082614_ASR_neurotrope_NAPA_MichaelClick To Listen to the Show

Alzheimer’s Speaks Radio goes live Tuesday Aug 26th at 11am EST,10am CST, 9am MST, 8am PST and 4pm London  time.  We love having an open conversation with everyone who is dealing with the disease.  Please call in live at (714) 364-4757to ask a question or share a thought or use the chat box to communicate with us.

Our first guests are Charles Ramat, Co-Chief Executive Officer and Dan Alkon, PhD., Neurotrope, Chief Scientific Officer and from Neurotrope. We will be discussing Alzheimer’s disease treatment challenges and Neurotrope’s development of bryostatin, their partnerships and minimally invasive, diagnostic biomarker analysis system.

Eric_Neurotrope_logoDuring our second hour we will listen to Michael & Shari Ellenbogen’s Speech at NAPA (National Alzheimer’s Project Act).  After we will discuss your thoughts and talk with Michael on how their speeches were received.  We would love for you to join the conversation.

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For more information on dementia and caregiving check out:

 

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The Purple Angel Project & NAPA

The Purple Angel Project & NAPA

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The New Global Symbol for Dementia

Finally a symbol for dementia that can be recognized around the world, with no language barriers!

We need as many people as possible to send a letter of support to NAPA (National Alzheimer’s Project Act) asking them to get behind and support the Purple Angel symbol which is the new global symbol for dementia.  No longer is it acceptable for countries, organizations or individuals to be divided on this issue.  The disease touches far too many people, both those diagnosed as well as their family, friends and co-workers.  It is in the worlds best interest to join forces and use one symbol to describe and help raise awareness for the various types of dementia:  Alzheimer’s disease, Lewy Body Dementia, Frontotemporal Dementia, Vascular Dementia and all the others.

SEND NAPA AN EMAIL SUPPORTING THE PURPLE ANGEL

napa@hhs.gov

Note in the subject line “PLEASE SUPPORT THE PURPLE ANGEL PROJECT”

If you are not familiar with the Global Purple Angel her is a bit of information about why it was designed and who started this movement. The goal of the symbol is very simple:

  • To raise awareness and education of all types of dementias.
  • To show support for those dealing with all types of dementias; both those diagnosed as well as those that care for them.
  • To remove the fear, isolation and stigmas associated with the disease.
  • To become a global symbol for dementia that has no language barriers.
  • To have the “Global Purple Angel” become as well known and accepted as the “Pink Ribbon” for breast cancer, allowing people to live with dignity.
  • To provide an economical way to work in collaboration.

This purple angel symbol can be used by anyone who is raising awareness of dementia anywhere in the world. The symbol has been developed by people with dementia and carers, and is not connected to any established organization.

The purple angel symbolizes a guardian over those living with dementia, as well as their families and friends, but also as a helper to all those working so hard to raise awareness of dementia around the world.

Jane Moore, a carer from Camelford, and Norrms McNamara, who has dementia and was a driving force behind the creation of the first dementia friendly community in the UK, produced the original design. Lynette Richards and Jeff Talbot produced the global version. They own the designs, but have given permission for the symbol to be used freely by anyone who is raising awareness of dementia, as long as they get feedback about how it is used.

For More Information On The Purple Angel Project And How You Can Get Involved, Please Visit Our Website Below For More Details.

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How We Can Stop The Dementia?

Plus New Caregiver Video on Alzheimer’s

Today we had the privelege to talk with George Vradenburg, President of the Vradenburg Foundation who has had an up close and personal look at Alzheimer’s disease.  He has taken his personal experience and his business skills to form US Against Alzheimer’s, an organization set out to change our Dementia Care Culture as we know it.  George talked about the biggest challenges we are facing are:

  • Removing the stigmas associated with dementia and building a collaborative movement for change
  • The lack of fiscal resources for  research
  • The sluggish approval for new drugs and the high cost of clinical trials

We learned how this disease is effecting society and what we can all do to make a difference.  Collaboration is king.  Listen in and learn how YOU CAN JOIN FORCES!

Join the conversation.  Learn how this disease is effecting society.  Learn how YOU CAN MAKE A DIFFERENCE!

To Contact or Get Involved with Us Against Alzheimer’s:

Website: www.usagainstalzheimers.org

E-mail for questions about how to get involved: takeaction@usagainstalzheimers.org

Facebook: www.facebook.com/usagainstalz

Twitter: @usagainstalz

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The second half of the show featured a new caregiver video, “Alzheimer’s Knows No Borders” created to  raise awareness for dementia and Alzheimer’s disease. Bakhus Saba, a leading Alzheimer’s Disease care advocate, song writer and video producer along with Andre Deplonty of Deplonty Productions made this video featuring caregivers from around the world.

Cynthia Gilley with “The Alzheimer’s Caregiver” also joined the conversation as she and her dad were in the video.  You can also find them on Facebook, just search for “The Alzheimer’s Caregiver.”

Check Out the Video Here

Bakhus Saba can be reached on Facebook.  He is located in Canada.

Bakhus Saba Songwriter

Bakhus Saba, son and songwriter

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bakhus still achild cover for radio andblog

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Check Out Our Website For Other Resources

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Tyler Jury with Bike4Alz.Org

on Alzheimer’s Speaks Radio

Tyler Jury is one of many family member touched by Alzheimer’s disease, but this young man is making a difference!

Join us in a fascinating discussion.

Tyler Jury, a senior at Western Kentucky University, is a native of Elizabethtown, KY.  He is a soon-to-be graduate of WKU with a double major in Chemistry and Biology. Tyler’s passion for Alzheimer’s comes from his experience with his grandfather’s diagnosis in 2005 and eventual death in 2009. Tyler founded Fijis Across America- A Cross Country Bike Ride to Raise Money and Awareness for Alzheimer’s Research- in 2009 to honor and commemorate his grandfather’s life as well as to raise awareness about this horrific disease. Six riders, led by Jury, rode over 3,200 miles on their bicycles through nine states during the summer of 2010 and through their efforts were able to raise over $56,000 towards the cause. This year, a group of men in Tyler’s fraternity at WKU have decided to take up the ride again to continue the fight against Alzheimer’s. Their group is known as Bike4Alz, and can be found on Facebook and Twitter under “Bike4Alz”, or online at www.bike4alz.org

Rick Phelps Founder of Memory People and the newly released CD and BOOK entitled “While I Still Can”  also joined us.  “While I Still Can…” is now available through our www.whileistillcan.net website. You can pay through the paypal account we have set up there.
The Soft Cover and Hard Cover is available for pre-order. There is an eBook addition that can be purchased, just follow the link to xlibris website. The eBook addition is available for instant download.  The audio version is not yet available. It will be coming soon. You will be able to download it or it will be available on CD.  All proceeds go for Awareness.

Last I want to give Kudos to Lynda Everman for sending us this information too!

In less than a week, the Obama administration will finalize the National Alzheimer’s Plan. This is our chance to set the nation on a path to stopping Alzheimer’s & ending the heartache of this cruel disease.

Can you be the next person to make a quick, but critical phone call to support a bold National Alzheimer’s Plan? We need to recruit more cosponsors to influence HHS and provide the support necessary to move it through Congress.

Making your call is easy and only takes a few minutes. Just follow these simple steps to call your Representative and your Senators:

1) Call the Congressional switchboard at 1-202-224-3121.

2) Ask the operator to connect you with your Representative or one of your Senators and you’ll be connected to one of your elected officials’ offices. Check here if you are unsure who they are: http://www.contactingthecongress.org/

3) When a staff person answers, ask to speak to the health legislative assistant. Tell them you are a constituent, briefly explain how Alzheimer’s has impacted your life, and ask your Representative/Senator to cosponsor the bipartisan resolution in favor of a strong National Alzheimer’s Plan (Senate Resolution 434 / House Concurring Resolution 120).

Thank you! Together, we CAN make a difference!

You can listen to the interview below.

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Here is a Great Article on the National Alzheimer’s Project Act

My friend Stanton Berg has written a wonderful article on his blog regarding the National Alzheimer’s Project Act, in simple easy to under language.  I suggest you read it.    It is a bird’s eye view of the new bill and also pointing out that the fight for proper  funding is not over…this bill does not provide a nickels worth of funding but hopefully the main objectives of the bill to coordinate all government efforts in preventing and treating Alzheimer’s as well as establishing a national strategy will promote the necessary future funding… 

 
Thank you Stanton for writing the article and being such a wonderful advocate for Alzheimer’s disease!
 

 

 

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