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Take Action: Make Alzheimer's A National Priority


Health & Wellness  (tags: Body-Mind-Spirit, disease, ethics, family, government, health, healthcare, humans, illness, prevention, protection, research, risks, safety, science, society, study, treatment, warning, medicine, investigation )

JL
- 616 days ago - act.alz.org
These recommendations include benchmarks to achieve the Plan's goal of preventing and effectively treating this deadly disease by 2025. In keeping with the President's remarks last night, we call on the President and Congress to take action



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JL A. (275)
Thursday February 14, 2013, 10:24 am
Last night, President Barack Obama mentioned Alzheimerís in his State of the Union Address, the first time thatís happened in thirteen years. He said:

Today, our scientists are mapping the human brain to unlock the answers to Alzheimerís; developing drugs to regenerate damaged organs; devising new material to make batteries ten times more powerful. Now is not the time to gut these job-creating investments in science and innovation. Now is the time to reach a level of research and development not seen since the height of the Space Race.

The Alzheimerís Association applauds the President for underscoring the importance of funding for medical research, and specifically research to end the Alzheimerís epidemic. We must provide Alzheimer's scientists with the resources they require in time for the huge generation of Baby Boomers who will as much as triple the ranks of the more than five million Americans who have Alzheimer's today. We must change the trajectory of Alzheimerís if we are to address one of the most significant underlying cost drivers of Medicare and Medicaid.

Just as with the National Alzheimer's Plan and the previous financial commitments from the Obama administration, the Presidentís statement about the importance of Alzheimerís research in his State of the Union Address is based on recognition of the human and financial impact of Alzheimer's. It is another important step on this continuing journey which our Association has so much responsibility to lead. It indicates the impact of our public work and our work behind the scenes. It is also a clear signal that your work and the work of our more than 500,000 nationwide advocates to make Alzheimerís a national priority is making a difference.

Just three weeks ago, the Alzheimerís Advisory Council, on which I have the honor to serve, unanimously endorsed recommendations to Health and Human Services Secretary Kathleen Sebelius, as well as to Congress, to update the National Alzheimerís Plan. These recommendations include benchmarks to achieve the Planís goal of preventing and effectively treating this deadly disease by 2025. In keeping with the Presidentís remarks last night, we call on the President and Congress to take action in the coming days to fully support the critical first steps in implementing this plan Ė a plan that is a result of bipartisan cooperation by Congress, swift and effective implementation by the Administration, and the input of many Americans with Alzheimerís, their caregivers and other advocates from across the country.

We must ensure that the National Alzheimerís Plan is fully funded. We must continue to raise concern about the disease to be commensurate with its impact and to raise awareness of our Association. We must expand the reach of programs so that all who face this disease know that they donít have to face it alone. And we must ensure that promising research is supported, shared and optimized in our fight with the devastating, debilitating killer that is Alzheimerís.

I look forward to our next steps together and to our ultimate success at achieving our mission. Thank you for everything you do to make such advances possible.

Harry Johns
Alzheimer's Association President & CEO
 

Laura Mancuso (63)
Thursday February 14, 2013, 11:10 am
Thanks for reminding everyone how important our support is.
 

Angelika R. (142)
Thursday February 14, 2013, 1:39 pm
noted, form blocked for my sign. sorry
 

JL A. (275)
Thursday February 14, 2013, 4:07 pm
Thanks for trying Angelika! You cannot currently send a star to Angelika because you have done so within the last week.
 

Joe R. (191)
Thursday February 14, 2013, 4:09 pm
Thanks JL. Signed and noted.
 

JL A. (275)
Thursday February 14, 2013, 5:25 pm
You cannot currently send a star to Joe because you have done so within the last week.
 

John B. (175)
Thursday February 14, 2013, 6:05 pm
Thanks J.L. for the post and link to the petition. Signed and noted.
 

Terry V. (30)
Thursday February 14, 2013, 6:09 pm
S&N THANKS!
 

JL A. (275)
Thursday February 14, 2013, 9:31 pm
You cannot currently send a star to John because you have done so within the last week.
You cannot currently send a star to Terry because you have done so within the last week.
 

Lynn Squance (232)
Thursday February 14, 2013, 10:57 pm
My mother has later stage Alzheimer's with an effective age of 2 years, unable to dress or manage her own hygiene, unable to feed herself completely, unable to talk --- BUT, she can still laugh, and hug and kiss. My mother lives in a care centre for dementia patients and it is a wonderful place where she is treated with dignity and compassion, as am I when I am there which is at least weekly.

My mother's mother's brother and sister both had Alzheimer's or dementia and lived into their late 80s.

My mother's mother's mother had Alzheimer's or dementia and died at age 93.

I think about Alzheimer's in one way or another EVERY day. It is a LIVING DEATH! A little of my mother is lost everyday to the disease. Had you seen her a year ago, you'd have a hard time believing she was the same person that you see today. If you knew her 5 years ago, a year after she moved into assisted living, you'd never in a thousand lifetimes believe this was the same person.

Not only does Alzheimer's/dementia destroy the afflicted, but it has the ability to destroy families and care givers. I know, because I am my mother's sole family close by and responsible for making all her decisions, medical, financial, personal. I will not allow Alzheimer's/dementia to destroy me as a care giver, but that does not say it is not hard to watch my mother. The nurses and care aids who look after her and 95 other residents who are at various stages of the disease are the best. When I go to see my mother each week, I feed her then we sit around the nurse's station. When staff are busy, I have become an extra set of eyes that keeps Frieda out of the dirty laundry, Helen from spitting on the floor, getting Maurice up to dance, and fetching staff when it is necessary. I am treated by staff with respect and was included in Christmas and New Year's potluck suppers for the staff. So it is very much an inclusive place.

You may not have encountered this in your lifetime, and I hope you never have to. But with an aging population, and no real knowledge of the causes of Alzheimer's or dementia, it is growing at an alarming rate. I encourage everyone to find out more about Alzheimer's and dementia in your area. If you can, become a volunteer. Don't be afraid.

Signed.
 

JL A. (275)
Thursday February 14, 2013, 11:05 pm
Thank you Lynn for sharing your personal experience with such eloquence. You cannot currently send a star to Lynn because you have done so within the last week.
 

Lynn Squance (232)
Thursday February 14, 2013, 11:27 pm
Thanks JLA for your message. I still don't have my personal messaging back --- the sending part --- so I can't reply to your message other than this way.

I might add that on 27/01/13 I walked in the Alzheimer's Walk for Memories raising $660 for the BC Alzheimer's Society for research and support services. There are many ways to help and it all starts with education.
 

Sandra Penna (107)
Friday February 15, 2013, 3:53 am
noted. unable to sign, only for USA citizens.
 

Giana Peranio-Paz (385)
Friday February 15, 2013, 4:14 am
Noted and signed. My father inlaw died of Alzheimer. It's a terrible disease. It can be slowed down with a special diet and with learning new things all the time, just not letting your mind get into a rut. It is hereditary. He was a haulacaust survivor and sometimes the memories are so terrible these people want to forget everything so this disease serves them.
 

Frans Badenhorst (552)
Friday February 15, 2013, 4:29 am
noted & signed..thanks for posting this JL, managed to sign ;)....... I think it is one of the most humiliating diseases....... very sad.....much more research into the root causes must be made
 

JL A. (275)
Friday February 15, 2013, 7:33 am
You are welcome Lynn. The group with the petition also has an online guide with the warning symptoms and other resources for that essential education. Thanks Giana for adding your personal story and knowledge.You cannot currently send a star to Giana because you have done so within the last week. You are so right Frans!
 

Jen A. (4)
Friday February 15, 2013, 10:01 am
Signed-It's amazing how in this day an age we have many things advanced with technology, but still no alzheimer's cure. My grandmother passed on from this disease, so it's important to me.
 

Patricia H. (468)
Friday February 15, 2013, 10:53 am
noted
 

Aaron Bouchard (129)
Friday February 15, 2013, 11:48 am
Noted thanks
 

Ludger W. (72)
Friday February 15, 2013, 1:11 pm
done
 

JL A. (275)
Friday February 15, 2013, 1:24 pm
You're welcome Aaron.
You cannot currently send a star to Ludger because you have done so within the last week.
 

Natalie V. (27)
Friday February 15, 2013, 2:58 pm
noted & signed
 

JL A. (275)
Friday February 15, 2013, 3:10 pm
You cannot currently send a star to Natalie because you have done so within the last week.
 

Birgit W. (147)
Friday February 15, 2013, 4:31 pm
Thanks
 

JL A. (275)
Friday February 15, 2013, 4:54 pm
You are welcome Birgit
 

linda g. (3)
Friday February 15, 2013, 6:41 pm
Signed and sent message along.
 

Judith Hand (59)
Friday February 15, 2013, 7:06 pm
First time I've printed a leter to be sent. This one hits home. My Dad died, with Alzheimer's over a year ago. I miss him dreadfully. But to see him living with Alzheimer's started the grieving process early. I've worked with people with the disease and I've known family of friends with it. It's a horror. it's frustrating. It's maddening. It's terribly sad. And I've never seen so many cases as I have in the past 7 years.
 

JL A. (275)
Friday February 15, 2013, 7:14 pm
Thank you for sharing some of the realities for people whose loved ones cope with this horrific condition Jude. Hopefully it will help someone else know they are not alone or otherwise make a difference to them. You cannot currently send a star to Jude because you have done so within the last week.
 

DAVID LAIRD (0)
Friday February 15, 2013, 7:46 pm
SIGNED
 

Tamara Noforwardsplz (185)
Friday February 15, 2013, 8:29 pm
Noted, signed, twittered and google shared. Thanks J.L. My grandmother passed 2 years ago from Alzheimer's. My father and stepmother took care of her and they went thru hell. She would become violent and abusive sometimes. It was awful.My sister was a nurse and she worked in the Alzheimer's unit, she was working with a patient who was normally very passive while on medication. He was sent to her section and no one told her that he had been taken off of his meds. He became very agitated when she was lifting him up and he fought her and ended up breaking her neck. Needless to say that was the end of her nursing career and she now can no longer work. They did surgery to repair the break, but it turned out they set it wrong. They had to re-break her neck and set it again. Now there are additional problems so they are going to have to re-break her neck again. Alzheimer's is one of the most horrifying diseases imaginable. I would not wish it on anyone. There definitely needs to be much more research done and treatments need to be better and more effective. Thanks J.L.
 

JL A. (275)
Friday February 15, 2013, 8:39 pm
Thank you Tamara for sharing your experience of some of the most challenging symptoms this condition can have (although not all with the condition have them) that pose health and safety risks to themselves and others. Another common symptom can be wandering away, if not living in a locked facility, which also is a health and safety risk. You are welcome Tamara and thank you for helping get the word out on this effort.
 

Shawna S. (42)
Friday February 15, 2013, 8:39 pm
noted...thanks :)
 

JL A. (275)
Friday February 15, 2013, 8:41 pm
You are welcome Shawna.
 

Stuart Thomas (515)
Friday February 15, 2013, 9:24 pm
Noted, signed, and submitted.

Thank you J.L.
 

Shanti S. (0)
Saturday February 16, 2013, 4:16 am
Thank you.
 

JL A. (275)
Saturday February 16, 2013, 6:10 am
You are welcome Shanti.
 

Cheriann P. (17)
Saturday February 16, 2013, 1:09 pm
Noted. Not allowed to sign. L♡ve ☮ Peace.
 

JL A. (275)
Saturday February 16, 2013, 3:31 pm
You cannot currently send a star to Heidi because you have done so within the last week.
 

Lis T. (0)
Sunday February 17, 2013, 5:06 am
Signed,
 

Bill and Katie D. (90)
Sunday February 17, 2013, 8:03 pm
I have seen Alzheimer's my mother in law had it was in rest home for 7 yrs. she just knew she wanted to go to heaven but didn't even know us or her name. Sad!!
Nobody wants this to happen. Surely a cure can happen.
 

JL A. (275)
Sunday February 17, 2013, 8:05 pm
You cannot currently send a star to Bill and Katie because you have done so within the last week.
 

Julie F. (67)
Tuesday February 19, 2013, 9:55 pm
Thanks.
 

JL A. (275)
Wednesday February 20, 2013, 7:51 am
You are welcome Julie.
 
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