Alzheimer’s Advocates in Action

I want to thank all of the Alzheimer’s advocates who have contacted me since I started my blog with news about what they are doing to fight AD and other dementias. I wanted to bring greater attention to your wonderful and heartfelt efforts in working to End Alz.

This new blog, Advocates in Action, is for you. Email me at [email protected] with your non-profit ventures to fight Alzheimer’s and I will post your information here. My door is always open!

~ Jennifer

May 20 2013 - Elizabeth Patrick
Lilburn, GA, USA
Lewy Body Dementia Association

Dear Jennifer,

We are launching our volunteer recruitment for Lewy Body Dementia Awareness Movement today for our October LBD Awareness Month! If you can please post and pass on where it is appropriate we would greatly appreciate it! The full press release is attached, and here are sample Facebook and Twitter posts:

Facebook:

We need your help to drive awareness of LBD this October. Will you be Standing Strong with LBDA? Join volunteers nationwide for the Lewy Body Dementia Awareness Movement, a national, grass roots effort to increase LBD awareness. Learn how to create awareness in your community and join the movement today!

[LINK TO http://www.lbda.org/go/awareness]

Twitter:

Can you help drive awareness for Lewy body dementia (LBD)? Register today and tell others you are to “Standing Strong with LBDA!”! #LBDAwareness www.lbda.org/go/awareness

Thank you,

Elizabeth Patrick
Marketing and Communications Manager
LBDA National Office

912 Killian Hill Road, SW
Lilburn, GA 30047
(p) (404) 935-6444 ext. 101
(f) (480) 422-5434
[email protected]
www.lbda.org

The Lewy Body Dementia Association is the only organization in the United States solely dedicated to improving the lives of LBD families. Click here to donate today!

Increasing Knowledge, Sharing Experience, Building Hope

May 15 and May 167, 2013 - Koichi Shudo, PhD
Research Foundation Itsuu Laboratory
Emeritus Professor of the University of Tokyo

Dear Jennifer:

I read the article dated April 24, 2013, in DimentiaToday with interest, because I am a researcher of retinoid who is an advocate for retinoid for treatment of AD for a long time in Japan.

Could you accept our summary of retinoid tamibarotene for the treatment of Alzheimer’s disease and peer-reviewed publications. Tamibarote is an
approved drug for leukemia with less side effect in Japan. Its clinical study for AD is now ongoing in Osaka, Japan.

Bio Pharm Bull tamibaro.pdf 3293K View Download

Curr Alz Res Toward Retinoid Therapy.pdf 303K View Download

tamibarotene for AD Rationale E 130516 with note Low Resoln.pdf 2773K View Download

Koichi Shudo, PhD
Research Foundation Itsuu Laboratory
Emeritus Professor of the University of Tokyo

April 30, 2013 - Mary Destri
UCSF Osher Center for Integrative Medicine

Hello Jennifer,

First, I would like to thank you for the important work that you are doing to help people with dementia and their caregivers. We have a new course 8-week course for caregivers, called Mindfulness-Based Dementia Care. The next class starts on May 9, and if there is any way you would be able/willing to help spread the good word, we would very much appreciate it. You can read about it at:
http://www.osher.ucsf.edu/classes-and-lectures/meditation-and-mindfulness/mindfulness-based-dementia-care/
Please let me know if you have any questions. Also, I see that you are in Northern California. If you would like to join our team for the Walk to End Alzheimer’s, we would be most honored!
http://act.alz.org/site/TR/Walk/CA-NorthernCaliforniaandNorthernNevada?team_id=85069&pg=team&fr_id=3266

All the best,
Mary

Mary Destri
UCSF Osher Center for Integrative Medicine
Development & Communications Analyst
1545 Divisadero Street, 5^th Floor
San Francisco, CA 94115

415-353-7882

[email protected]

http://www.osher.ucsf.edu/

March 9, 2013 - Courtney Holmes
The Bath, a short film about Alzheimer’​s (An update)

Hi Jennifer!

April 2, 2013 - Elizabeth Patrick
Lilburn, GA, USA
Lewy Body Dementia Association

Dear Jennifer,

Thank you again for the great coverage of our Blog posts! We just announced that LBDA and the Alzheimer’s Drug Discovery Foundation awarded two grants to support dementia research. (Press Release attached) Feel Free to post and pass on!

Link on our site:

http://www.lbda.org/content/lewy-body-dementia-association-and-alzheimer%E2%80%99s-drug-discovery-foundation

Thank you!

Elizabeth Patrick
Marketing and Communications Manager
LBDA National Office

March 15, 2013 - Tommy Whitelaw
Scotland, UK
Tommy on Tour

March 20, 2013 - Elizabeth Patrick
Lilburn, GA, USA
Lewy Body Dementia Association

Hi, Jennifer,

We just had a couple of Blog posts on LBD if you can please post/pass on:

National Parkinson Foundation, Caregiver Blog: 5 Caregiving Tips for Lewy Body Dementia

http://parkinson.org/Caregivers/Caregivers—On-The-Blog/March-2013/5-Caregiving-Tips-for-Lewy-Body-Dementia

Guest blog: Lewy Body Dementia (LBD) Explained : CaregivingCafe Blog http://buff.ly/155VjEq #caregiver #LBD #dementia @LBDAssoc

Thank you,

Elizabeth Patrick
Marketing and Communications Manager
LBDA National Office

912 Killian Hill Road, SW
Lilburn, GA 30047
(p) (404) 935-6444 ext. 101
(f) (480) 422-5434
[email protected]
www.lbda.org

The Lewy Body Dementia Association is the only organization in the United States solely dedicated to improving the lives of LBD families. Click here to donate today!

Increasing Knowledge, Sharing Experience, Building Hope

March 15, 2013 - Tommy Whitelaw
Scotland, UK
Tommy on Tour

In case its of interest to you my awareness work based on life stories continues in honor of my mum whose story started this campaign and has been added to by many hundreds more. In memory of Joan Whitelaw my magnificent mum 15-7-39 – 22-09-12

Dementia Carer voices / Tommyontour members debate Parliament March 20th

Please see news on my dementia carer voice project based on the Tommyontour campaign

The ALLIANCE is pleased to announce that Dementia Carer Voices will be the subject of a Members Business debate on the 20^th of March.

Just after 5 pm next Wednesday, Members of the Scottish Parliament will debate Jackie Baillie MSP’s parliamentary motion which highlights the role played by those who care for the estimated 86,000 people in Scotland living with dementia, the challenges they face and the importance of supporting them by raising awareness of dementia and the carer journey. The motion welcomes the ALLIANCE’s Dementia Carer Voices project for giving a platform to the views and experiences of carers of people with dementia across Scotland

The Dementia Carer Voices project team have produced a briefing and will be available in the Garden Lobby from 2-2:30pm, to meet with Msps and discuss the work of the project.

The debate can be watched on the Scottish Parliament’s ‘Parliament TV’ section of its website-http://www.scottish.parliament.uk/newsandmediacentre/3168.aspx ” border=”0″ height=”13″ width=”12″>

http://www.alliance-scotland.org.uk/get-involved/view/dementia-carers-voices/

Motion S4M-05522: Jackie Baillie, Dumbarton, Scottish Labour, Date Lodged: 30/01/2013

That the Parliament understands that there are currently 84,000 people in Scotland living with dementia*, a figure that is expected to double over the next 25 years; acknowledges that caring for someone with dementia can be a difficult experience; values the contribution made by families and carers of people with dementia in the Dumbarton constituency and across Scotland who, on a daily basis, provide support to loved ones with the illness; recognizes the importance of carer support and respite where appropriate; notes the importance of raising awareness of dementia and ensuring that people with dementia are treated with dignity and respect, and welcomes the work of a number of key stakeholders and organisations who give a platform to the views and experiences of carers of people with dementia across Scotland including the Health and Social Care Alliance’s Dementia Carer Voices Project and Alzheimer Scotland’s National Dementia Carers Action Network.

*The most recent statistics now put this figure at 86,000.

Dementia Carer Voices

Dementia Carer Voices, managed by the ALLIANCE, is a two year project funded by the Scottish Government which harnesses the work of Tommy Whitelaw and recognizes the importance of the carer voice, in informing future service provision and in empowering carers themselves.

In June 2011, as part of his ‘Tommy on Tour’ campaign, Tommy Whitelaw, a carer for his late Mum Joan, walked around Scotland’s towns and cities to raise awareness of the impact of dementia on families and the difficult but vital role played by carers. Since then, he has engaged with thousands of carers through twitter, his blog and frequent talks to health and social care professionals and carers organisations across Scotland, allowing him to collect hundreds of life stories from people which detail their experiences of caring for a loved one living with dementia. The letters demonstrate that carers of people with dementia often feel isolated and that there is insufficient recognition of the range of complex issues about which they are expected to have understanding, from legal to financial, to health and housing, as well as, cope with the distressing, social and emotional demands of caring.

• As Project Officer with Dementia Carer Voices. Tommy continues to collect letters and stories and build on that work. The project aims to –
• Capture the experiences of carers across Scotland with a view to informing future policy and service provision;
• Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia;
• Highlight the role of carers as natural resources; carers as people with needs;
• Work with other carer organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users.

Outcomes

Establish a greater understanding of dementia and the carer journey among health and social care professionals;

Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and enabling carers to ask for additional help when it is needed;

Reduce isolation of carers of people with dementia;

Increase awareness of carer rights;

Gather information supporting family and person centered approaches to health and social care.

The project will achieve this through visits and talks by the Project Officer Tommy Whitelaw to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media; and films to raise awareness/understanding. A Dementia Carer Voices survey is presently in operation via the ALLIANCE website to collect key carer information which will be captured and published to raise further awareness of issues of importance to carers. Evaluation feedback from talks to carer organisations is also available on the web and indicates high levels of satisfaction particularly from health and social care students about hearing the carer voice first hand.

twitter @tommyNtour

Collecting Life Stories,raising awarerness

Short film shown at parliament http://tv.enterprisescreen.co.uk/watch?v=347

BLOG http://tommy-on-tour-2011.blogspot.com

Tommy Whitelaw

[email protected]
Mob: +447921395712

March 6, 2013 - Nathan Smith
Chevy Chase, MD, USA
A Ride To Remember: Biking Across the US for Alzheimer’​s Research

Hi Jennifer,

I and three friends will be graduating from St. Mary’s College of Maryland this May. As both a capstone to our college experience and a way to contribute to the post-college society we are about to enter, we are biking from Washington DC to San Francisco and raising awareness and funds for Alzheimer’s Disease care and research.

We are aware of the striking recent reports predicting that Alzheimer’s Disease is soon to become a top medical concern in the United States. Well, we are not ok with that. Two of our party, including myself, have been personally effected by Alzheimer’s and upon hearing the news of its anticipated rise in prevalence we put together our fundraiser. Please check out our website, http://www.aridetoremember.net/

We would greatly appreciated if Dementia Today would help us garner donations and awareness via our twitter account @ARTR_2013 Do you think Dementia Today could tweet about our ride?

March 13, 2013 - Jeffree Itrich
San Diego, CA, USA
Alzheimer’s Disease Information Network

Hi Jennifer,

Thank you for registering for the Alzheimer’s Disease Information Network. Your March newsletter is attached:

Alzheimer’s Disease Information Network March Newsletter

We also have a blog that your readers may find of interest that you can access on our website. Here’s a shortcut: http://adcs.org/Blog/ADCSBlog.aspx I should be posting another article on the blog later today.

Jeffree

Jeffree Itrich, M.S.W., M.J.
Manager, Recruitment & Communications

Tel: 858-246-1317

[email protected] www.adcs.org

February 14, 2013 - Rakel Berenbaum
Jerusalem, Israel
Melabev Family Caregivers

Hi Jennifer,

Nice website.

We at melabev have been working with people with dementia for over 30 years. Here are some articles from our website that might interest your readers if you would like to link to them.

• Savion to improve communication
• Savion cognitive stimulation for people with dementia
• Top Ten things Israel has done in the fight against Alzheimer’s disease
• http://www.melabev.org/posts/773

please let me know what you think?

Thanks,

Rakel berenbaum

March 9, 2013 - Courtney Holmes
The Bath, a short film about Alzheimer’​s

Hi Jennifer,

I’m writing to tell you about a short film called “The Bath,” starting Kathleen Chalfant (Rescue Me, The Guardian) and Cheyenne Casebier (John Adams). It’s a heartfelt story surrounding a family that is becoming increasingly strained under the weight of Alzheimer’s disease. Through inescapable hardship, the family comes together and finds solace.

For the writer & director Mark Lundsten, the topic is extremely personal. His mother is living with Alzheimer’s. He turned to the medium of filmmaking to make sense of his experiences. The film was successfully cast and filmed, however now we are conducting a Kickstarter campaign to raise money for the post-production. This incudes expenses such as editing, color correction, festival entry fees and the original soundtrack.

If you could pass on the link for our Kickstarter, or spread the word of this film to anyone you know who may be interested, it would mean a great deal to us. The movie is so close to completion, and we feel certain that once it makes its way into the world, it will be a wonderful and positive impact on the lives of anyone dealing with this terrible disease.

Thank you so much for your time,
Courtney Holmes
510-508-4544

Kickstarter: http://www.kickstarter.com/projects/143946888/the-bath-post-production

Fidalgo Films: http://fidalgofilms.com/the-bath

March 13, 2013 - Elizabeth Patrick
Lilburn, GA, USA
Lewy Body Dementia Association, Inc.

Hi Readers, Elizabeth has been sending me emails about upcoming LBDA events. I ran behind in my email, but please check out their terrific website at www.lbda.org. Here is a short list of upcoming events with the LBDA:

March 16, 2013
San Diego CA
2013 AAN Annual Meeting
Affirm Yourself for Caregiver Challenges. For family and professional caregivers

March 28, 2013
Affirm Yourself for Caregiver Challenges, Part 1 of a 5 Part Series

If you have questions, please contact:

Elizabeth Patrick
Marketing and Communications Manager
LBDA National Office

912 Killian Hill Road, SW
Lilburn, GA 30047
(p) (404) 935-6444 ext. 101
(f) (480) 422-5434
[email protected]
www.lbda.org

The Lewy Body Dementia Association is the only organization in the United States solely dedicated to improving the lives of LBD families. Click here to donate today!

November 7, 2012 - Tracy Rose
Healthline

On Tue, Nov 6, 2012 at 10:06 AM, tracy.rose <[email protected]> wrote:

Hi,

Healthline recently finished putting together a collection of the best online Alzheimer’s videos. You can find it at: http://healthline.com/health-slideshow/best-videos-alzheimers

We encourage you to share the list with friends, followers, and subscribers.

Thank you in advance for your consideration.

Warm Regards,
Tracy