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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: alzheimers funding

How Can You Help Stamp Out Alzheimer’s?

15 Saturday Feb 2014

Posted by Ann Napoletan in Advocacy and Awareness, Facts & Figures, Fundraising, Help Stamp Out Alzheimer's, Research, Washington

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alzheimers, Alzheimers advocacy, alzheimers disease research semi postal stamp, alzheimers funding, dementia, stamp out alzheimers

07.19.15 IMPORTANT UPDATE: The Alzheimer’s Disease Semipostal Stamp has been reintroduced as part of the Alzheimer’s Action Act. If passed, this would allow for the voluntary purchase of a stamp that would raise funds for critically needed research. Please write or call YOUR representatives and urge them to Help Stamp OUT Alzheimer’s by co-sponsoring HR 3092!

If your life hasn’t yet been directly impacted by Alzheimer’s disease, consider yourself very fortunate. If you have been touched by Alzheimer’s or another form of dementia, you know how critical it is that we explore every possible avenue in our quest to end these horrific diseases.

Wouldn’t it be fantastic if there were a way to procure additional funding for Alzheimer’s research without increasing taxes, discretionary spending, or the federal deficit? What if I told you there is a way to do just that?

What is a Semipostal Stamp?

Simply put, a semipostal stamp is a fundraising stamp. Postal customers have the option of purchasing these stamps in lieu of regular First-Class stamps, at a slightly higher cost, and the additional revenue is used to raise money for a specific purpose. Semipostal stamps provide an easy and relatively inexpensive way for people to show their support for a given organization or cause.

In 1998, the Breast Cancer Research stamp was issued as the first semipostal in United States history. Since then, it has raised over $77.6 million to further breast cancer research. That’s almost $80 million from the sale of a tiny little postage stamp – pretty phenomenal, isn’t it?

So, the obvious question seems to be, why don’t we have an Alzheimer’s semipostal to fund research? Ask Kathy Siggins and Lynda Everman and they will tell you it certainly isn’t due to lack of trying! These two ladies have spent countless hours campaigning to make it happen…

Kathy’s Story

Kathy Siggins knows Alzheimer’s all too well. Her husband, Gene, was just 57 when she began noticing small changes that worried her.

Kathy & Gene“My late husband began showing signs of needing more direction when driving to familiar places. Forgetfulness and repetitive questions followed. He always took care of our finances in a timely manner, however, as he began to struggle and wanted no help, our arguments intensified,” explains Kathy.

In 1988, dementia forced Gene into early retirement, and during the course of his illness, Kathy became a determined advocate. She began sharing their story in 1997, and when Gene died two years later, her passion and resolve grew even stronger. With that came an intense desire to raise awareness and help find a cure. Like so many grieving caregivers, she was lost, and in many ways, it was advocacy work that helped her find her way.

Lynda’s Story

Lynda Everman has spent most of her adult life as a caregiver. Her journey began almost 20 years ago when her father began showing signs of dementia. Just a few years later, her husband, Richard, was diagnosed with mild cognitive impairment (MCI) at age 57.

Lynda & Richard“We were told the conversion of MCI to Alzheimer’s disease could occur in as little as three or as many as six years. In Richard’s case, it was 12 years. As the years passed, I began to believe that we had beat Alzheimer’s disease, that we had arrested its course, and that we would live out our lives with inconvenience and infrequent atrocity, but not the deep and pervasive sadness of constant loss that is dementia. But I was wrong. We were no match for Alzheimer’s disease. No one is,” says Lynda.

Lynda and Richard shared what she describes as “an unshakable belief in the power of the individual to make a difference and affect positive change.” As the disease progressed, Lynda’s determination flourished, and she began to speak out about their experience. Soon she was attending town hall meetings and advocacy trips to her state capital.

Birth of an Idea

Just eight months after losing her husband, Kathy was attending an advocacy seminar when she first heard about the Breast Cancer Research stamp; up to that point, Kathy hadn’t been aware of the semipostal program. Now that she knew about it, if there was a possibility for an Alzheimer’s stamp, she had to make it happen. She reached out to her contacts at the USPS, and with that, her quest for an Alzheimer’s semipostal began.

In the summer of 2000, President Clinton signed the Semipostal Authorization Act into law, which gave the USPS the authority to issue more semipostals. When an RFP was issued looking for candidates, Kathy was ready. Her proposal included almost 12,000 signatures along with letters from the Department of Health and Human Services, the Alzheimer’s Association, and the National Association of Retired Federal Employees.

Kathy explains, “On September 7, 2001, I visited the offices of Senator Barbara Mikulski and Rep. Edward Markey.  Each office presented me with a copy of the letter they had sent under separate cover to the USPS in support of my proposal. Sixteen members of the Congressional Task Force signed the letter from Rep. Markey.”

Less than two weeks after the RFP submission deadline, the tragic events of 9/11 took place and the semipostal program was temporarily suspended.

Ultimately, the program was cancelled, and today, Kathy’s proposal remains pending with the USPS. When the Citizen’s Stamp Advisory Committee told Kathy there wasn’t enough interest for an Alzheimer’s stamp, she set out to prove them wrong. Before it was all said and done, over 84,000 signatures had been collected.

Alzheimer's Commemorative StampBy 2008, Kathy’s efforts and those of several key players in Washington had generated enough interest for the USPS to issue the short-lived Alzheimer’s Awareness Commemorative Stamp. Unfortunately, it went no further.

Meeting of the Minds

Meanwhile, Lynda had started her own semipostal campaign. Unaware of Kathy’s work, Lynda wrote letters to all of the living Presidents and First Ladies and anyone else she thought might have the influence needed to get the job done.

One day in 2012, while searching the Internet for information on the Alzheimer’s Awareness Commemorative Stamp, she ran across Kathy’s name for the first time. The two women with a shared passion first connected on Facebook and became fast friends.

Continuing their crusade, the passionate, persistent pair has written and hand delivered letters to every member of Congress asking them to co-sponsor the Alzheimer’s Disease Research Semipostal Stamp (S.1091/H.R. 1508).

Kathy explains that for the first time, the legislation has now been introduced as a bill, which carries more weight than a resolution. The groundwork has been laid, but more effort is needed to convince Washington how important passage is.  And that, my friends, is where we come in!

Raise Your Voice

Kathy and Lynda suggest the best way to get involved is to call the US Capitol Switchboard.

It’s easy. Follow these steps:

1. Call the U.S. Capitol Switchboard at 202-224-3121 and ask to be put through to the offices of your two Senators and Representative.

If you don’t know the names of your representatives, you can get that information, as well as the direct line to their offices, by visiting: http://www.contactingthecongress.org.

2. Once you reach each lawmaker’s office, ask to speak with the Health Legislative Aide. Be certain to let him or her know you are a constituent, as they often track the issues most important to their voters. Tell the staffer how strongly you feel about H.R.1508 (House) and S.1091 (Senate), and ask for the representative’s co-sponsorship.

graph-2011_national_institutes_of_healthPassage of this legislation will boost awareness for Alzheimer’s and related forms of dementia, and most importantly, will help fund the research that is so vital. The time is now! In 2013, over 5.4 million Americans are living with these illnesses, and that number expected to jump to almost 14 million by 2050. We simply can’t afford to wait.

Kathy and Lynda remind us that our action will encourage additional co-sponsors to get behind the Alzheimer’s semipostal. This is our chance; without the necessary support, the proposed legislation will die in committee, never making it to the floor for a vote. The clock is ticking…

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From the Desk of George Vradenburg: Please Take Action

23 Monday Dec 2013

Posted by Ann Napoletan in Advocacy and Awareness, Research, USAgainstAlzheimer's, Washington

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alzheimers, Alzheimers advocacy, alzheimers funding, alzheimers research, dementia

USAgainstAlzheimers

Friends –

We’ve finally got a budget deal – now what will Congress do with it?

The next three weeks are crucial in determining how much to invest in stopping Alzheimer’s.

Urge your members of Congress to increase funding for Alzheimer’s research now.

I was proud to participate at last week’s G8 Dementia Summit in London where world leaders recognized the leadership of the United States by endorsing our goal of preventing and treating Alzheimer’s by 2025. This landmark action marks a historic step forward in the global fight against Alzheimer’s.

And Wednesday, Congress took what could be the first step in freeing up additional funding for Alzheimer’s research by passing the first budget in years. Your advocacy helped make this happen!

But will Congress use the increased flexibility in this budget deal to allocate the funding needed to reach the goal of stopping Alzheimer’s by 2025?

The next three weeks will be crucial in determining funding levels for Alzheimer’s research in Fiscal Year 2014.

Please urge your members of Congress to support a significant increase in funding for Alzheimer’s research as they begin to flesh out the details of the new budget agreement.

Although the bi-partisan budget deal that Congress passed this week partially addresses the deep budget cuts – known as “sequestration” – that went into effect earlier this year, it does not yet determine the level of funding for NIH and for Alzheimer’s. The current level of Alzheimer’s research funding is only about one-quarter of the amount leading Alzheimer’s scientists have deemed as the minimum necessary to achieve the goal of ending Alzheimer’s by 2025.

Last week, at the landmark G8 Dementia Summit1, member nations recognized the leadership of the United States by committing to identify an effective therapy for dementia by 2025 and to significantly increase the amount of funding for dementia research to reach that goal. This action underscores how the U.S. is seen as leading the global movement to stop Alzheimer’s disease, just as we played a similar role in global efforts to prevent and treat HIV/AIDS a decade ago.

Now Congress must respond to the call of the G8 and provide adequate funding for Alzheimer’s research so this country can continue to demonstrate its leadership in the global fight to stop Alzheimer’s by 2025.

Ask your members of Congress to urge the Appropriations Committee to include an $80 million increase in Alzheimer’s research, as well as an additional $20 million to support Alzheimer’s patient and caregiver programs in the spending package they’re creating right now.

Thanks to all your efforts in fighting the sequester and to the successful G8 Dementia Summit last week, momentum is building – now it’s up to us to turn that momentum into real-world action.

Your members of Congress need to hear from you today to ensure that ending Alzheimer’s is a top priority. Please send your message now.

To stop Alzheimer’s, we have to be brave and demand action – and insist that our leaders share our courage. Only when we join together as an engaged and enraged community will we stop this disease.

Sincerely,

George Vradenburg
Chairman and Co-Founder
USAgainstAlzheimer’s

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The Time is NOW: Raise Your Voice to Washington

15 Friday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, Research, USAgainstAlzheimer's, Washington

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Tags

Alzheimers advocacy, alzheimers funding, alzheimers research

usa2_logo_email_headerDear Friends….

Leading researchers believe we can stop Alzheimer’s by 2025 if sufficient funding is allocated to Alzheimer’s research.

Congress is hammering out the details of the 2014 budget right now and we must convince them to prioritize biomedical research funding before it is too late.

The deep budget cuts – known as “sequestration” – that went into effect earlier this year are slowing efforts to find the cause of Alzheimer’s and to develop effective treatments and therapies to slow, modify, stop, and eventually prevent it.

The NIH’s 2013 budget has already been cut by $1.55 billion and, unless we can convince Congress to change course now, even more drastic cuts will be made in 2014 that will mean fewer research grants and delayed progress in medical breakthroughs.1

Some researchers are being forced to take out personal loans to keep their labs open – a practice that is clearly unsustainable.2

labpicThe budget cuts also mean that fewer research scientists are being trained – we’ve already lost one out of every ten MD-PhD training slots due to sequestration.3

Congress will be trying to reach an agreement on the budget in the next two to three weeks. This blueprint would set spending levels, and without adequate room for biomedical research and other programs, increased funding for Alzheimer’s research will be unlikely.

You and I both know that the squeaky wheel gets the grease. Taking just a minute to  raise your voice now will help ensure that our call for Alzheimer’s research funding can be heard in the halls of Congress.

Click here to ask your members of Congress to reverse the devastating cuts and invest more in biomedical research in the budget they’re creating right now.

Thank you again for raising your voice to stop this devastating disease from claiming more lives and destroying more families.

1. http://www.nih.gov/news/health/jun2013/nih-03.htm
2. http://fcnp.com/2013/08/21/congressman-morans-news-commentary-sequester-cuts-disrupting-nih-projects/
3. http://www.baltimoresun.com/news/opinion/oped/bs-ed-biomedical-research,0,6244826.story

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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