Feeds:
Posts
Comments

Posts Tagged ‘The Purple Angel project’

Dementia Action Alliance – Webinar – “Living Fully with Dementia”

DAA logo Medium“A nation joined will make the difference.”

You are invited you to join our Special Living Fully with Dementia – Personal Perspectives” Discussion on Wednesday, July 15th, 2015 at:

1:00 pm Eastern    12:00 pm Noon  Central     11:00 am Mountain     10:00 am Pacific Time

We are honored that Alexander “Sandy” Halperin, DDS; Truthful Loving Kindness; Robert Bowles Jr., R.Ph. and Harry Urban will share insights and inspiring messages from their uniquely personal journeys as advocates, mentors, bloggers, and speakers in the U.S. and globally.

We know their experiences will provide much food for thought for our efforts to advance “Living Fully with Dementia” across our country.

We will use an online ZOOM platform with expanded capacity that will allow us to see one another and talk to one another.

To join our meeting, please follow these directions:

Join from PC, Mac, iOS or Android:  https://www.zoom.us/j/950829550

Or join by phone:   (415) 762-9988      Meeting ID:  950 829 550

If you have not used Zoom before, go through the following steps about 5-7 minutes before the meeting, as you may need to download software.

1.    Go to www.zoom.us on your computer.

2.    Look at the strip along the top of their website and to the right side and you will see their small blue Join a Meeting click-through.

3.    Click on Join a Meeting (It may tell you to download software)

4.    Enter the meeting code   950829550

5. Or Join By Phone:   (415) 762-9988        Meeting ID:  950 829 550

Do not hesitate to contact Jackie at jpinkowitz@gmail.com or 732.212.9036 with any questions you may have.

The Dementia Action Alliance is committed to helping people live fully with dementia and supporting those who care about them. We are a volunteer coalition engaged in changing our nation’s understanding and attitude of dementia through serving as a trusted source for education, conversations, and advocacy.

For Additional Resources on Dementia and Caregiving

Click Below

alzsnap_serv_072413

Join an Alzheimer’s disease clinical trial today.

AlzTeam Banner-475x358 - CopyNo insurance is needed to participate.

Join The Purple Angel Project

PA_join_the_cause_snap_w_urlTo Raise Awareness

 

Read Full Post »

Creating Dementia Friendly Communities – The Purple Cities Initiative

Creating Dementia Friendly Communities

061515 Dementia Friendly citieis Purple Angle CitiesJoin Alzheimer’s Speaks Radio to Learn About

The Purple Cities Initiative

Tuesday June 16th, 2015

11am EST, 10am CST, 9am MST, 8am PST and 4pm London Time

Come and join us for a fabulous conversation on creating Dementia Communities.  Kathy Broggy will be our guest and has been the lead on developing the Purple Cities Alliance in Tennessee.  Check out all they are doing!  www.purplecities.org              Phone: 865 219-6968 Alzheimer’s Speaks Radio is proud to raise all voices regarding dementia.  If you have an opinion we would love to hear it.  Call in and join the conversation or use your chat box to communicate with us.  If you think you should be a guest contact Lori La Bey.

Check out Alzheimer’s Speaks for Dementia and Caregiving

alzsnap_serv_072413

Join an Alzheimer’s disease clinical trial today.

Click Below

AlzTeam Banner-475x358 - Copy

Join the Purple Angel Project

PA_join_the_cause_snap_w_url

Read Full Post »

Dementia Chats Educational Webinar Recorded Session – March 10th 2015

Dementia Chats Educational Webinar

Recorded Session – March 10th, 2015

031015_DC_snap_dena_robert_Paulan_robert_eilon click_above_watch_recorded_webinarToday we discussed our healthcare system with our experts living with the diagnosis of dementia.  How do we get doctors and medical professionals to get educated and knowledgeable not only about dementia specific to their specialty, but to  find out and provide supportive services to assist those dealing with the disease.  Many great examples were given and strategies were discussed in this hour long session.

For more information on the Dementia Chats Educational Webinar Series, CLICK HERE

For & Information on Dementia & Caregiving

Click_belowalzsnap_serv_072413

Read Full Post »

Engaging Alzheimer’s With Kerry Mills Co-Author of “I Care.”

021715 ASR Kerry MIllsEngaging Alzheimer’s

Kerry Mills Co-Author of

“I Care.”

We go live Tuesday, Feb 17th, 2015, at  11am EST, 10am CST, 9am MST, 8am PST and 4pm London time; or you can always listen to the show later at your convenience too!

kerry_mills_pic_2Alzheimer’s Speaks Radio, loves hearing from everyone at every level regarding dementia.  If you think you might make for a great guest, please contact

Lori La Bey founder of Alzheimer’s Speaks Resource Website.

engaging_alzheimers_logo_llc_FINAL

Tuesday we will be honored to have Kerry Mills founder and president of Engaging Alzheimer’s LLC.  Kerry is also the co author of I Care – A Handbook for Care Partners of People with Dementia.  Join us and come with your questions and comments.  Call in at  (714) 364-4757   Kerry mills ICare_cover_135x216Reach Kerry Mills via her   Website   phone  914-962-0997

For additional information on Alzheimer’s disease and other dementias

Click Below
alzsnap_serv_072413
Thanks to our collaborators

alz_spks_thank_you_to_sponosors012715

 

Read Full Post »

A Note From Norrms on The Purple Angel

happy 1st birthdayTo All Purple Angel Ambassadors across the globe:

 A VERY HAPPY 1st BIRTHDAY!    

 

 

A HUGE THANK YOU TO EACH AND EVERY ONE OF YOU FOR ALL THE HARD WORK YOU HAVE PUT IN THIS YEAR AND TO THOSE WHO HAVE WORK PLANNED FOR NEXT YEAR!

NORRM, ELAINE AND I ARE SO PROUD!

SPECIAL THANK YOU TO LAWRENCE KELLY, CEO OF OSTRICH CARE TOGETHER WITH JULIE AND ELAINE FOR CREATING THIS BIRTHDAY WITH A CELEBRATION OF THE FIRST 50 PURPLE ANGEL AMBASSADORS HELD ON 16TH NOVEMBER, 2013!

 

THIS HAS BEEN A FANTASTIC YEAR!

Check out this link to see the progress being made.

For more information on the Purple Angel Project

US Click here

UK Click here

For More Information on Dementia & Caregiving

Click Below

alzsnap_serv_072413

Looking for Great Holiday Music?

combineid AlzMusCon logo and CD

Read Full Post »

Glen Campbell’s Film “I’ll Be Me” Is Out And Worth Seeing!

Glen Campbell’s Film

“I’ll Be Me”

You Will Laugh and Cry,

But Most Of All

You Will Be Touched

By This Powerful Film

Call a theater close to you to find out if the movie is playing.

If Not, Let Them Know It Should Be!

Normally, I’m not a big fan of celebrity advocacy for dementia.  I know many will say big names equal a big following, but when it comes to dementia we need more then people showing up one time for a performance to be entertained.

We need people that are going to be emotionally touched by a celebrity performance or advocacy. Touched in a way that lasts long beyond walking out of a theater or event.  One which shifts their perceptions and educates them at the same time.  One that makes people think.  One having a strong impact getting people wanting to discuss what they have just experienced.  One that ignites a passion to join a cause effecting so many.  One that develops compassion and creativity to make a difference.

Glen Campbell’s Documentary, “I’ll Be Me,” Does Just That! 

Kudos to Glen, his wife Kim, his children, friends and peers in the music industry.  Each of you played a powerful role in raising awareness for Dementia.  You showed the true impact this disease has on everyday relationships. How it changes lives no matter who you are. How popular you’ve been or are, how much money made or currently have, where you live, how old you are… and the list goes on….

Nothing Can Protect You From This Disease. 

My hope is that one day soon one of the many big names in this film will take the bull by the horns and pull together a fund raising single, like a “We Are The World,” the benefit single for victims of famine in Africa. It raised over $60 Million, which was distributed to Ethiopia, Sudan, and other impoverished countries.  Or better yet maybe a “Live Aid Concert for Dementia!”  With so much talent, being just as vulnerable to this disease as the rest of us, they could truly make a huge impact on finding a cure and providing support services for those living with the disease.

Just a few of the stars featured in this film who know and love Glen Campbell are:  Bruce Springsteen, Bill Clinton, The Edge, Paul McCartney, Jay Leno, Vince Gill, Jimmy Webb, Blake Shelton, Sheryl Crow, Keith Urban, Brad Paisley, Steve Martin, Chad Smith and Taylor Swift.  If you know any of these influential people or others in power positions, please reach out to them and have a conversation about pulling a star studded group together to raise funds to improve lives of people around he world. It is done all the time for major disasters.

 This Is A Major Disaster. 

It just doesn’t happen to be weather or war related.  This is an international health crisis which will touch everyone in their lifetime on some level. A person every 4 seconds somewhere in the world is diagnosed with dementia. The numbers are frightening and our budgets to dealing with both research dollars and social support are embarrassingly low!  It is time to come together as world.  To join forces to improve lives and really make a difference.

There Is No Escaping It!

Here is where the show is playing in my area in Minnesota

Marcus Theater – Oakdale, MN

AMC Southdale – Edina , MN

Regal Brooklyn Center Stadium 20 – Brooklyn Center, MN

lori_with_radioFor all of those involved or who wished they would have been involved in this film, or for those like me who just saw the the film; I would love to have you on Alzheimer’s Speaks Radio to discuss why you felt this was an important film and how it had an impact on your life, what you are willing to commit to, to help raise awareness and educate others or to help support those dealing with the disease.  What you would like to see in the future regarding dementia. What ideas do you have to make a difference to help shift our care culture?

Contact Lori La Bey, founder of Alzheimer’s Speaks to be part of a radio show.  I would actually love to set a special 2 hour show to allow people time to reflect and share their thoughts across the globe.  For those of you that know me, you know I feel strongly about having open and honest conversations which allow us to shift our care culture for Dementia from Crisis to Comfort.

Kudos to the Glen Campbell family and those involved in making this incredibly honest film.  What a beautiful gift to the world this was.

I’m sure the family has taken some heat for exposing this disease and what some might say as “using” Glen in the process.  I know what that feels like. It’s awful.  My own mother had the disease for 30 years.  We had plenty of time to discuss how to leverage an awful disease, an awful situation and make it beneficial to others. There is power in having purpose.  Glen shinned through in this film even as the disease nibbled away at him.  Glen had purpose.  He was able to link to what he loved and could do it way longer then the doctors ever imagined possible. Sharing true loving stories of real life is never a bad things, once we step outside our egos and understand it’s for the greater good.

Again, I say “Kudos Campbell family for having the strength and courage to make Glen’s life full as well as his family, friends and fans doing what he loved for as long as he could.”

Dementia Knows No Boundaries.

We Shouldn’t Either.

So Join the Global Cause

To Shift Our Dementia Care From Crisis to Comfort

SocialMedia081114_purpleangel_carousel TMClick Above To Learn More About The Purple Angel Project

A Big THANK YOU To National Tour Sponsors

Of  “I’ll Be Me”

PointClickCare, Pathway Health, CliftonLarsonAllen, Covenant Health Network, HJ Sims, Essential Decisions, Inc., Attitude Edge Companies, Messerli & Kramer P.A., Disney Family Fund, Easter Seals, Leading Age and to our Minnesota Sponsors where I saw the film: UCare, Volunteers of America, Mayo Clinic, Open Heart Foundation and Aging Services of Minnesota

For More Information On Dementia and Caregiving

Click Below and Check Out Alzheimer’s Speaks

alzsnap_serv_072413

Click Below For a Special Holiday CD

Designed With New Technology

For Those With Dementia

combineid AlzMusCon logo and CD

Read Full Post »

Alzheimer’s Prevention and Treatment: What Can We Really Do?

Alzheimer’s Prevention and Treatment:

What Can We Really Do?

Margaret Manning with SixtyandMe.com has put another great video together.

For Information and Resources

on Dementia and Caregiving

Check Out Our Website Below

combo_of_alz_spks_sevices

Read Full Post »

Common Sense Caregiving On The Topic Of Dementia Friendly

common_sense_caregiving_discussion_logo

On The Topic Of Dementia Friendly

with Gary Joseph LeBlanc founder of Common Sense Caregiving, Norrms McNamara founder of the Purple Angel Project, Harry Urban founder of the Forget Me No support group on Facebook and Lori La Bey founder of Alzheimer’s Speaks.

Lori_on_common_sense_caregiving_062214

For more resource on dementia and caregiving

Check out our website below

Alz Speaks multi logo_091113

Read Full Post »

Please find a link to a petition Jan Inman has started to recruit and pay for more Admiral Nurses in the UK.  The petition has just over 3000 signatures but needs 5000 to submit to Rt Hon Mr David Cameron.

jan_inman_of_uk

Jan and her husband Click on the photo to go to the petition

Thank you all so much for helping out in this matter!  It’s very easy to sign.

For Information On Dementia & Caregiving

Check Out Alzheimer’s Speaks Website Below

Alz Speaks multi logo_091113

Read Full Post »

mICHAEL_ELLENBOGEN_SPEAKINGMichael Ellenbogen will be presenting to NAPA Committee (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, co-workers and communities.

Please send emails to support the Purple Angel Project to

napa@hhs.gov

after 2 PM eastern time on the 29th of April.

purple_angel_from_michael_raising_awareness_around_the_world

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.

Lori La Bey Founder of Alzheimer's Speaks

Lori La Bey Founder of Alzheimer’s Speaks

Lori La Bey, founder of Alzheimer’s Speaks is asking our readers to send emails of support for the Purple Angel Project.  We need one logo, “The Purple Angel” to represent all dementias.  We need the globe to  embrace, understood and accept the importance of dementia and how it has a ripple effect throughout communities and families.

Please send emails to support the Purple Angel Project to

napa@hhs.gov

after 2 PM eastern time on the 29th of April.

Here is a copy of Michael’s speech.

December 11, 2013 was a great day for those living with dementia. That was the day of the G8 Dementia Summit. Many became energized that day; motivated to find a cure for dementia and to improve the lives of those who are living with the disease. They realized the importance of including those living with the disease in the process. And although I am disappointed that the US did not take the lead in this world health crisis, it was still a huge step in the right direction, and there is no reason why we cannot catch up.
We need to create jobs in the scientific world and keep the money and the brightest minds here. We could use the HIV model that was so successful. The long-term gain will be a huge return on the money invested plus the many lives we save. While we have some great plans in place we must push harder for funding and make the hard choices.
Please keep this momentum going and do not be afraid to rock the boat for this cause. That is the only way we will win this battle.

In February I submitted my state Alzheimer’s plan to the governor for approval. There are many other states that have plans or are creating plans. There are some states that have not even started. We need a system in place that identifies what states are doing in relation to dementia. We should have some kind of rating system focusing on the plans and their execution. This will give states an incentive to do better and not fall behind. It will also give others a place to go and use the best model and even encourage competition.

Please encourage Congress and Senators to sponsor the Alzheimer’s Accountability Act (S. 2192/H.R.4351), which requires scientists at the NIH to submit an annual Alzheimer’s research budget proposal directly to Congress and the president, specifying the resources needed to fully implement the National Alzheimer’s Plan without political and budgetary restrictions.

Background:
Congress unanimously passed the bipartisan National Alzheimer’s Project Act (P.L. 111-375) in 2010. The law instructs the Department of Health and Human Services (HHS) to develop a strategic plan to address the rapidly escalating Alzheimer’s disease crisis. The annually updated National Alzheimer’s Plan must be transmitted to Congress each year and is to include outcome-driven objectives, recommendations for priority actions and coordination of all federally funded programs in Alzheimer’s disease research, care and services. The plan also includes the goal of effectively treating and preventing Alzheimer’s by 2025.

However, the one missing piece in this plan is a projection of the level of funding necessary to reach the critical goal of effectively treating and preventing Alzheimer’s by 2025. The Alzheimer’s Accountability Act represents a bipartisan effort to ensure that Congress is equipped with the best possible information to set funding priorities and reach the goal of the National Plan to Address Alzheimer’s Disease – effectively preventing and treating Alzheimer’s by 2025.
For every $100 that the National Institutes of Health (NIH) spends on Alzheimer’s research, Medicare and Medicaid spends $26,500 caring for those with the disease. Unless something is done, Alzheimer’s will cost an estimated $1.2 trillion (in today’s dollars) in 2050. Costs to Medicare and Medicaid will increase nearly 500 percent. This is outright foolish and we must change this course.

By now you will all be familiar with the 2014 Facts and Figures book from the Alzheimer’s Association. I was disappointed because for some reason they have chosen to be conservative with the numbers, which are actually far worse than those reported. We should also be incorporating all dementias not just AD. I am aware of the negativity that surrounds these diseases, but I think this is the only way people will understand.
Every four seconds someone gets a death sentence. Not from a judge in a courtroom, but from a doctor in a consulting room. No one is immune to this disease, and once you get it there is no turning back. There are no life-saving medicines, no therapies, no hope. All that is guaranteed is a brutal, undignified death.
So what is being done about this global health crisis? Well the short answer is: not a lot!
It seems that the government is just standing by and watching us die.
More than 500,000 people die every year from Alzheimer’s, that’s more than the number killed by breast cancer and prostate cancer. And yet it is not given the focus, research or funding that cancer receives, which is distressing since there is a 98% survival rate for breast cancer sufferers and a 0% survival rate for those with Alzheimer’s.
There are no survivors, no one to stand up and say I had this disease, but thanks to the wonders of medical science I am cured and free to live a normal healthy, productive life.
Even those with terminal cancer can talk about their disease and how it affects them and their loved ones. But what if you have no voice? Alzheimer’s robs you of that luxury along with being able to write.
We need to get those who control the purse strings to prioritize spending, to fund projects into research, develop medications, therapies etc. We need to act now, we need your help, we need to have hope.
I have heard representatives from many organizations speak at these meetings, and I sometimes feel they see it as an opportunity to advertise their company or organization. I think they forget why they are here.

Many speakers represent those living with FTD, Down Syndrome, and Lewy Body, as well as other forms of dementia. What I find interesting is that although they are all involved in the same cause they all seem incapable or unwilling to join forces with other organizations and work together. It seems they feel that their cause or issue is more important. My message to them and others is this: it is not about your organization, it is about the people you represent.
It amazes me that many people still don’t know about NAPA, those who do should share this information so others living with the disease have the opportunity to be heard. I have been coming to these meetings for a long time, and I rarely see any other attendees who are also impacted by Alzheimer’s/dementia. In fact it was I who brought someone along with me to speak at the last meeting. As organizations representing people living with dementia, it is your job to invite them to these meetings.
It is imperative that you see and hear the people who are living with this disease. The committee has to realize we desperately need your help, and it is only through your work and the work of others that we will get to a cure. So please provide information about these meetings on all your websites, and encourage participation from everyone, you know many of these people, pick up the phone and find a way to bring them here. It’s because of them you are doing this.

Finally, please join us in using the Purple Angel World logo on your websites and awareness campaigns as a symbol of support for enhancing dementia awareness, hope, and empowerment for all. This symbol represents all types of dementias. The Purple Angel was created in Great Britain to become the universal symbol, representing our united support, joining together to raise dementia awareness on a global basis; as well as our hope that, one day, researchers will find a cure! This is a grass-roots campaign driven by the people living with the disease and their care partners.
Please Adopt ONE symbol that will come to represent our global message and mission of RAISING awareness, HOPE, and EMPOWERMENT FOR ALL PEOPLE LIVING WITH DEMENTIA, THEIR FAMILIES, AND THEIR CARE PARTNERS. Let’s stop the confusion.
One final concern. When NAPA was started all of the written public comments were displayed on the NAPA web site. About 6 months ago you were behind on updates. I was told you were in process of updating the information and it would be available in a few weeks. This went on a few more times. The other day all of the public comments seem to have been removed and no further updates have been seen for about a year now. I see this as an issue because these comments should always be available on the web site for all to read.

Please send emails to support the Purple Angel Project to

napa@hhs.gov

after 2 PM eastern time on the 29th of April.

For  more resources on dementia and Caregiving go to our website below:

Alz Speaks multi logo_091113

Thank you for your help and support!

Read Full Post »

Older Posts »

%d bloggers like this: