Stafford County Resident and Greater Richmond Chapter Supporter Joins the National Alzheimer’s Association Early-Stage Advisory Group

Barb Cole 2015 ESAG HeadshotMore than 5 million Americans are currently living with Alzheimer’s disease and those in the early stage of Alzheimer’s play an active role in the fight against the disease. The Alzheimer’s Association recognizes the importance of this valuable perspective and is pleased to welcome 12 new members, including Stafford County resident, and Greater Richmond Chapter supporter, Barbara Cole to the 2015-2016 Alzheimer’s Association National Early-Stage Advisory Group.

The Early-Stage Advisory Group members help raise awareness of Alzheimer’s and reduce stigma associated with the disease by sharing their personal stories and experience living with dementia. They also advocate for increased research funding and provide input to the Association about programs and materials designed to meet the growing needs of early-stage individuals.

“The Alzheimer’s Association is pleased to continue the Early-Stage Advisory Group, now in its ninth year,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “Only by listening to those living with Alzheimer’s can we all gain a true understanding of their experience.”

Cole was chosen from 37 applicants across the country to be a part of the Early-Stage Advisory Group. She is a wife, a mother of two daughters, and career woman with a master’s degree in Business, and a self-proclaimed optimist and over-achiever.

“Some have called me a force of nature,” Cole explains. “I’ve never met an obstacle I could not get around, overcome or power through!”

In 2010, at 53, she was diagnosed with early onset Alzheimer’s, one of the approximately 200,000 people nationwide under the age of 65 living with Alzheimer’s.

“There were some very subtle changes that I began to notice,” Cole said. “It seemed that routine tasks were taking longer to complete – things like balancing the checkbook – and I would make frequent mistakes, forcing me to double and triple check just to make sure there were no errors.”

An MRI and Brain Scan revealed that Cole’s Left Temporal and Parietal Lobes were not “lighting up” as they should and she was informed that she had some form of dementia, probably Alzheimer’s.

“I cannot imagine a more horrible journey for my family – a disease with no cure, no real treatment – and a disease with a very dreadful and definite progression into oblivion with the eventual loss of memories, and with that, myself.”

“But, I’ve decided to make something positive come out of my Alzheimer’s journey and to use my strength to make a difference,” Cole said. “I am fully committed to use every bit of my energy to educate the public about Alzheimer’s, to dispel the myths and misconceptions, to advocate for increased funding and research, and to end the stigma associated with the disease.”

In addition to serving as national spokespeople for media and educational events, previous Early-Stage Advisors helped to secure the addition of younger-onset Alzheimer’s to the Social Security Administration’s Compassionate Allowance Initiative, giving those with the disease access to certain social security benefits. They also participated in grassroots advocacy efforts supporting the establishment of the first national plan to address the Alzheimer’s epidemic.

Early-Stage Advisors have also offered input on numerous Alzheimer’s Association services such as “I Have Alzheimer’s Disease” (www.alz.org/i-have-alz), an online resource offering information and tools to help those with early-stage Alzheimer’s or another dementia, ALZConnected® (www.alzconnected.org), the first dedicated social networking community for anyone impacted by Alzheimer’s, and TrialMatch® (www.alz.org/trialmatch), a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies.

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VIRGINIA ALZHEIMER’S DISEASE AND RELATED DISORDERS COMMISSION TO HOLD RICHMOND LISTENING SESSION

The Virginia Alzheimer’s Disease and Related Disorders Commission is preparing to update the Virginia State Dementia Plan and they want to hear from people with dementia and their caregivers. To facilitate this, the Commission is holding a Greater Richmond Listening Session from 1pm to 3pm on June 16th at the Alzheimer’s Association Greater Richmond Chapter, 4600 Cox Road in Glen Allen.

Staff from the Virginia Department for Aging and Rehabilitative Services and the Alzheimer’s Association Greater Richmond Chapter will join the Commission and provide an overview of the Virginia Dementia State Plan.

Individuals with dementia and mild cognitive impairment, as well as family caregivers, are encouraged to attend the public listening session. Health care professionals are also welcome. Those in attendance will be encouraged, but not required, to speak about the Virginia Dementia State Plan, their dementia care needs, and the challenges that they face in dealing with dementia.

The Virginia Dementia State Plan is a planning document from the Virginia Alzheimer’s Disease and Related Disorders Commission and outlines a strategic, coordinated approach to respond to dementia-related needs throughout the Commonwealth. The plan includes goals, objectives and strategies that Virginia can employ to ensure the state is prepared to support individuals with dementia and their caregivers.

The session will also highlight the accomplishments made to improve Virginia’s dementia response in the last four years.

To view the Virginia Dementia State Plan, please visit http://www.alzpossible.org.

To learn more about the Alzheimer’s Association Greater Richmond Chapter, please visit http://www.alz.org/grva.

The Longest Day 2015

The Longest Day is a team event to raise funds and awareness for the Alzheimer’s Association that is held annually on the summer solstice, June 21st.

For approximately 16 consecutive hours, sunrise to sunset meant to symbolize the challenging journey those living with Alzheimer’s and their caregivers face every single day, thousands of individuals across the country, including hundreds in Central Virginia, will come together in support of the Alzheimer’s Association mission and efforts and participate in any activity they love, even Triathlons, to honor someone facing the disease.

Registration is simple and can be done online at http://www.alz.org/longestday

After registering, these ‘Team Captains’ will receive everything they need to get started, including fundraising tools, a publicity toolkit, a T-shirt and additional items to promote the event. Since The Longest Day falls on a Sunday this year, they can choose to hold events on either Sunday, June 21 or Monday, June 22 to accommodate their schedule.

Alzheimer’s disease is global epidemic. Worldwide, at least 44 million people are living with the disease, including 130,000 individuals right here in Virginia.

● Alzheimer’s disease is the sixth-leading cause of death in the United States. It kills more Americans than diabetes, and more than breast cancer and prostate cancer combined.

● More than 5 million Americans are living with Alzheimer’s disease, and that number is expected to grow to as many as 16 million by 2050.

● More than 15 million Americans are Alzheimer’s and dementia caregivers, fulfilling a financially, emotionally and physically draining role.

Whether it’s The Longest Day, or any day of the year, the Alzheimer’s Association is here to help those facing Alzheimer’s disease via our 24/7 Helpline (800.272.3900) or online at alz.org.

If you have questions about the Longest Day, please feel free to contact the Association at 804-864-3678.

ALZHEIMER’S ASSOCIATION ADVOCATES CELEBRATE ALZHEIMER’S LEGISLATIVE VICTORY

ALZHEIMER’S ASSOCIATION ADVOCATES CELEBRATE ALZHEIMER’S LEGISLATIVE VICTORY WITH AN EYE TO THE PRESIDENT’S 2016 BUDGET
Alzheimer’s Accountability Act Incorporated into Funding Bill Signed into Law
Alzheimer’s Association Statement – Washington, D.C., December 17, 2014

As the largest Alzheimer’s advocacy organization in the world, the Alzheimer’s Association, and its relentless advocates, applaud Congress for creating a formal process to ensure that scientific judgment will guide them in future Alzheimer’s research funding decisions. This critical provision comes from the Alzheimer’s Accountability Act (H.R. 4351/S. 2192), which was fully incorporated within the fiscal year 2015 funding bill signed into law by the President.

Because of this action, Congress will be equipped with the best information to determine necessary Alzheimer’s research funding levels in each year leading up to 2025 to achieve the primary goal of the National Plan to Address Alzheimer’s Disease, creating a means to prevent and effectively treat Alzheimer’s disease.

“In setting funding levels, Congress has told us that they want to hear directly from the nation’s top scientists. That’s exactly what the Alzheimer’s Accountability Act does by connecting scientists with appropriators,” said Harry Johns, president and CEO of the Alzheimer’s Association. “The Alzheimer’s Association urged the introduction and passage of this Act so that Congress understands what science will bring us to the day when there will be survivors of Alzheimer’s, just as there now are for the other major diseases in our country.”

Introduced in April, the Alzheimer’s Accountability Act calls for the National Institutes of Health (NIH) to submit a Professional Judgment Budget for Alzheimer’s disease research each year until 2025 to achieve annual research milestones established under the National Alzheimer’s Plan. It will reflect the state of Alzheimer’s knowledge and the required investments in research identified by leading scientists to achieve the plan’s 2025 objective.

With the Alzheimer’s Accountability Act, Congress has created a mechanism that will utilize rigorous scientific judgment, rather than shifting political interests and unforeseen events, to guide Congressional funding allocations to achieve the 2025 goal.

Alzheimer’s Association grassroots advocates and staff held thousands of congressional meetings to secure support for the Alzheimer’s Accountability Act since the bill’s introduction. While the Alzheimer’s Association and its sister organization, the Alzheimer’s Impact Movement, were the only two organizations to endorse and work to advance the Alzheimer’s Accountability Act, the legislation received strong, bipartisan support in both the House and the Senate.

In addition to the Alzheimer’s Accountability Act, the funding bill included a $25 million increase for Alzheimer’s research, which comes on the heels of an unprecedented $122 million increase for Alzheimer’s research, education, outreach and caregiver support in fiscal year 2014.

Together, these increases bring annual federal funding for Alzheimer’s research to $591 million. However, scientists have stated that accomplishing the goal of the National Alzheimer’s Plan will require a commitment of at least $2 billion a year.

“According to leading experts, we must dramatically increase research funding to accomplish the primary goal of the National Alzheimer’s Plan to prevent and effectively treat Alzheimer’s by 2025. The Alzheimer’s Accountability Act will ensure that Congress hears directly from scientists what they will need to successfully achieve the federal government’s goal,” said Johns. “We now eagerly look forward to the President’s fiscal year 2016 budget with the tools in place to implement urgently needed, significant increases in Alzheimer’s funding to finally stop the human and economic devastation it causes.”

There are currently more than 5 million Americans living with Alzheimer’s disease at a cost to the nation of $214 billion a year, according to the Alzheimer’s Association 2014 Alzheimer’s Disease Facts and Figures report. Though Alzheimer’s is not normal aging, because advancing age is the greatest risk factor and Americans are living longer than ever before, those numbers are projected to soar to as many as 16 million by 2050, costing the nation $20 trillion over the next 40 years.

For more information on Alzheimer’s disease and available resources, visit the Alzheimer’s Association at alz.org/grva.

CONTACT:
Erin Heintz, 202.638.7040;
eheintz@alz.org
Alzheimer’s Association Media Line, 312.335.4078,
media@alz.org

Alzheimer’s Association Greater Richmond Chapter’s Eighth Annual Alzheimer’s Advocate Recognition Reception

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On Wednesday, November 5th, in honor of Alzheimer’s Disease Awareness Month and National Family Caregivers Month, the Alzheimer’s Association Greater Richmond Chapter held its Eighth Annual Alzheimer’s Advocate Recognition Reception at the Virginia Historical Society. The event was emceed by Easy 100.9 FM’s Bill Bevins.

“Advocacy means ‘giving voice’ and this year’s honorees work tirelessly in the community to give voice to those who can no longer speak for themselves,” said Sherry Peterson, CEO of the Alzheimer’s Association Greater Richmond Chapter. “Advocacy is a major component of our mission and all of our advocates play an important role in improving the quality of life for people with Alzheimer’s disease and their families and their combined voices provide hope and are a powerful tool for change.”

This year’s honorees included Robert B. Schaefer, Delegate Christopher K. Peace, and Seniors Guide.

Robert B. Schaefer:

Mr. Schaefer became an Alzheimer’s care partner when his wife Sarah was diagnosed in her late 40’s and for twenty-two years he provided loving care, first at home and then in a long-term care facility. During this time, Schaefer began volunteering with the Alzheimer’s Association Greater Richmond Chapter and in 2000, he and Debbie Perkins began the Chapter’s first support group for those in the early stage of the disease and their caregivers – a group he is still involved with today – and is a facilitator for two other Association support groups. Schaefer is a sought after speaker who openly shares his experiences and knowledge to help others and has served as a First Responder Trainer for the VA Department of Criminal Justice Services. At one time, he had trained every State Trooper in the Commonwealth and continues to provide First Responder Training through the Chapter. Schaefer was appointed by Governor Mark Warner to the Virginia Alzheimer’s Disease and Related Disorders Commission where he served for 10 years as Chair of the Training Work Group. His book, Alzheimer’s: The Identity Thief of the 21st Century, was published in 2010.

Delegate Christopher K. Peace:

Delegate Peace represents the Virginia House of Delegates’ 97th District, which includes part of Hanover, King William and New Kent Counties, and serves on the Appropriations, Health Welfare and Institutions, and General Laws Committees, as well as several statewide boards including Criminal Justice Services Board, Joint Commission on Health Care, Virginia Commission on Youth, Human Services & Public Safety Committee of the Southern Legislative Conference (SLC), Human Services & Welfare Committee of the National Conference of State Legislatures (NCSL). He has carried important legislation
ALZHEIMER’S ASSOCATION ADVOCATE RECOGNITION RECEPTION CONTINUED

relating to guardianship, home healthcare and assisted living care that has helped improve the quality of life for persons with dementia. During the last legislative session, Delegate Peace led the fight to increase funding and coverage for the Public Guardianship Program in Virginia.

Seniors Guide:

Seniors Guide, published by Ross Publishing, Inc., has been an advocate and partner for the last six years as a sponsor, promoter, and friend of the Alzheimer’s Association Greater Richmond Chapter. Their efforts to support the Chapter include generously donating advertising space in their publication to the Chapter to promote and publicize activities like the Walk to End Alzheimer’s, A Round to Remember, The Conference on Dementia, and general Chapter services and information, such as Know the 10 Signs.

“We are truly grateful for the continued advocacy that these honorees provide on behalf of local families,” added Peterson.

Past honorees include: 2008 – The Honorable John M. O’Bannon, III; The Honorable John S. Reid, Andrea McDaniel of NBC12, and DOMINION; 2009 – The Honorable Edd Houk, Alex Nyerges, the Director of the Virginia Museum of Fine Arts; and Genworth Financial; 2010 – Alzheimer’s Training for First Responders by the Department of Criminal Justice Services, Dr. Peter A. Boling, Senator Mark Warner, and Markel Corporation; 2011 – The Honorable Franklin Hall, Mrs. Phoebe Hall, Dr. Ayn Welleford, and Mary Washington Healthcare; 2012 – Senator Steve Martin, Dr. Patricia Slattum, and Don and Christy Talbott; 2013 – Lynne Seward; WWBT NBC 12, and WXGM Xtra 99.1 FM.

To learn more about becoming an Alzheimer’s advocate, please visit alz.org/grva