20 opportunities to learn during April
If you are curious about memory loss, look at Know the 10 Signs. If you need specific knowledge or just something to make your life easier, try Learning to Connect, Healthy Habits for a Healthier You or Caregiver Stress: Relief, Acceptance and Empowerment. No matter where you are in the journey we have a program that will help.
http://www.optimumseniorcare.com/services/alzheimerscare.php
Advocates see Hill Day as an opportunity for meaningful action
More than 1,000 Alzheimer’s advocates clad in purple sashes headed to Capitol Hill on March 25 for Hill Day — the culmination of the 27th Alzheimer’s Association Advocacy Forum in Washington, D.C. This year’s event was the largest to date, with advocates from all 50 states attending to learn about Alzheimer’s-related legislation and visit with their elected officials.
March 25, 2015
More than 1,000 Alzheimer’s advocates clad in purple sashes headed to Capitol Hill on March 25 for Hill Day — the culmination of the 27th Alzheimer’s Association Advocacy Forum in Washington, D.C. This year’s event was the largest to date, with a record-breaking number of advocates from all 50 states attending to learn about Alzheimer’s policy priorities and visit with their elected officials.
With the December 2014 enactment of the Alzheimer’s Accountability Act, which allows scientists at the National Institutes of Health (NIH) to directly communicate with Congress about the resources needed to meet the goals of the National Plan to Address Alzheimer’s Disease, the mood among advocates was hopeful and determined.
A delegation from Oregon met with Sen. Ron Wyden (D-Ore.), who supported the additional $25 million in funding for Alzheimer’s research in the fiscal year 2015 budget.
Mark Donham of Lake Oswego, Oregon, cared for his wife, Chris, who was diagnosed with younger-onset Alzheimer’s disease at age 40 and passed away at 54. Donham turned his grief into action, serving as the board chair for the Alzheimer’s Association Oregon Chapter and organizing a support group for men. He has attended the Forum for seven years.
“When I come to the Forum, I’m representing all of the Oregonians affected by Alzheimer’s disease,” he said. “Although the Alzheimer’s Accountability Act is a keystone, we have to continue advocating for increased research funding.”
Mark was joined by Dawn and Doug Frazier of Prineville, Oregon, who also brought their grandson, Clay, age 12. Dawn and Doug lost their eldest daughter and Clay’s mother, Rhonda, to younger-onset Alzheimer’s when she was just 34 years old – a very rare occurrence.
“As parents, something just seemed off to us,” said Dawn. “She was a college graduate but couldn’t find a job. She couldn’t remember where her car was parked.”
For Dawn, attending her first Forum is an opportunity to raise awareness that Alzheimer’s is “not just an old person’s disease.” She can experience and feel the camaraderie that exists among her fellow advocates.
“I’m so impressed by all of the people that are here,” she said. “This is a way for us to gather together and be part of the action.”
The delegation sat down to share their stories with legislative aide Lauren Goldschmidt. The advocates took turns sharing information, including an ask for $300 million in additional funding for Alzheimer’s research at NIH, and support of the bipartisan Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act, which was introduced earlier that morning.
Jim Martin, 59, of Portland, Oregon, said passage of the HOPE for Alzheimer’s Act would provide a sense of security to combat what he faces in the future. In 2010, he suffered a traumatic brain injury, and despite what doctors coined “a remarkable recovery,” he has memory loss and an increased risk of developing dementia. A former trial lawyer, Martin uses his professional skills to share his story and advocate on behalf of all those affected by Alzheimer’s and other dementias.
For Martin, who lives alone and has adult children in Chile and San Francisco, the HOPE for Alzheimer’s Act would ensure better communication about his medical history whenever and wherever he should need to receive care in the future. Newly diagnosed Medicare beneficiaries and their caregivers would receive comprehensive care planning services and will require their diagnosis to be documented in their medical record. It will also help inform health care providers about what steps should be taken following a diagnosis, which will enhance assistance for people with Alzheimer’s and their caregivers.
“I want the senator to support the HOPE (for Alzheimer’s) Act, so systems will be in place to help me with care,” Martin said. “It could make such a difference in so many people’s lives.”
Advocates from Kentucky visited with Rep. Brett Guthrie (R-Ky.) to present him with the Alzheimer’s Association Humanitarian Award, which recognizes public officials who have made a significant policy contribution to advancements in research and enhanced care and support for Alzheimer’s disease. Guthrie received this honor for his leadership in co-sponsoring the Alzheimer’s Accountability Act in the House along with Rep. Paul Tonko (D-N.Y.). The Senate co-sponsors, Sen. Ed Markey (D-Mass.) and Sen. Mike Crapo (R-Idaho), also received the award.
The cause is personal for Guthrie. Both his great uncle and his wife’s grandfather had Alzheimer’s, and his conversations with advocates reflected his familiarity with the disease and the devastation it causes families.
Advocate Christy L’Heureux of Bowling Green, Kentucky, doesn’t have a familial connection to the disease, she does have a personal one: She works as a case manager for Home Instead Senior Care.
“I don’t have one someone to care for,” she said. “I have over 100 someones, and many of them have Alzheimer’s disease.” In her role as a professional caregiver, L’Heureux acts a resource, providing a wide range of advice regarding Alzheimer’s and acting as a liaison for the many long-distance caregivers who are unable to be with their family members every day.
“These people are my extended family. I worry for the family. I mourn with them. I become a shoulder for them to cry on,” she said. “And when I lose one of them, I lose a family member, over and over again. Alzheimer’s is heartbreaking.”
L’Heureux serves as an Alzheimer’s Association Ambassador, an advocate who works to directly maintain a relationship with a specific member of Congress. Christy is an Ambassador to Guthrie.
“My job is to be a constant source of information,” she said. “He wants to fight the good fight, but he needs the information. It’s like he’s our champion, and we’re the lieutenants.”
L’Heureux gave Guthrie information provided by the Association that included illustrations of the rising costs of Alzheimer’s, the disparity between the funds spent on research as compared to the cost of care and the devastating loss of life caused by the disease.
Guthrie appreciated the collateral, commenting that some of the graphics really “said it all,” and agreed to review the information in detail to see if he could lend his support. He also encouraged the advocates to keep sharing their stories.
“I always tell people, ‘Tell your story, that’s what we remember when you walk out,’” he said.
Many advocates concluded their day on the Hill by attending a hearing convened by the U.S. Senate Special Committee on Aging, titled “The Fight Against Alzheimer’s Disease: Are We on Track to a Treatment by 2025?” A crowd filled the hearing room to capacity to encourage additional funding for Alzheimer’s research, express concern over the rising cost of the disease to the nation and show their support of the HOPE for Alzheimer’s Act.
The hearing featured personal testimony from Dr. Ronald Petersen of the Mayo Clinic, a leading Alzheimer’s researcher and former Alzheimer’s Association National Board member; B. Smith, former model, restaurateur, retailer, author and actor, who has been diagnosed with younger-onset Alzheimer’s disease; and Smith’s husband, Dan Gasby.
When speaking to the committee, chaired by Sen. Susan Collins (R-Maine) and ranking member Sen. Claire McCaskill (D-Mo.), Smith said, “I’ve been a model and a TV personality, but now I have the most important job. I’m here because I have Alzheimer’s.” Gasby shared his experience at the Alzheimer’s Association National Alzheimer’s Dinner the evening before. “What I saw there last night was a team…We’re at the tipping point. We’re going to push this over,” said Gasby.
The committee also heard testimony from Richard J. Hodes, M.D., director of the National Institute on Aging at the NIH; Heidi R. Weirman, M.D., division director of geriatrics at the Maine Medical Center; and Kimberly Stemley, Alzheimer’s Association advocate and chief financial officer of Rx Outreach in St. Louis, Missouri.
Stemley shared her challenges as an Alzheimer’s caregiver for her mother. “Today, my mother is living in a skilled nursing facility in Missouri,” she said. “I’m confident that she is receiving appropriate care in the right setting. However, getting to this point was a challenge, and there are many families out there who never get the care and support they desperately need to face this terrible disease.”
After hearing Stemley’s testimony and the remarks of the rest of the panel, McCaskill responded, “Not funding research is dumb, because it’s going to cost us a lot of money. Refusing to fund care is cruel.”
The importance of Alzheimer’s as a bipartisan issue on Capitol Hill was also apparent at the hearing, as many committee members attended to listen to expert testimony and question the witnesses. Collins and McCaskill were joined by Sens. Bill Nelson (D-Fla.), Sheldon Whitehouse (D-R.I.), Joe Donnelly (D-Ind.), Tom Cotton (R-Ark.), Elizabeth Warren (D-Mass.), Tim Scott (R-S.C.), Tim Kaine (D-Va.), Richard Blumenthal (D-Conn.), Robert Casey (D-Pa.) and Thom Tillis (R-N.C.).
Toward the end of the hearing, Collins addressed the sea of advocates dressed in purple in the audience, letting them know that their voices were heard.
“It’s my hope that someday soon the color purple will also represent those who survive Alzheimer’s,” she said.
http://www.optimumseniorcare.com/services/alzheimerscare.php
Football team tackles Alzheimer’s
For eighteen years the Illinois Wesleyan has raised funds for the Alzheimer’s Association, Greater Illinois Chapter in remembrance of a Coach many of the players have never met. Coach, Don “Swede” Larson, worked at Wesleyan for 35 years passed away in 1994, but his presence is still very strong.
http://www.optimumseniorcare.com/services/alzheimerscare.php
Advocacy successes celebrated at National Alzheimer’s Dinner
At the National Alzheimer’s Dinner on March 24, part of the Alzheimer’s Association Advocacy Forum, leaders working to end Alzheimer’s were honored for their efforts and attendees celebrated advances made in the fight against the disease. A highlight of the festivities was emcee Wolf Blitzer, CNN’s lead political anchor and host of “The Situation Room with Wolf Blitzer.”
March 24, 2015
At the National Alzheimer’s Dinner on March 24, part of the Alzheimer’s Association Advocacy Forum, leaders working to end Alzheimer’s were honored for their efforts and attendees celebrated advances made in the fight against the disease. A highlight of the festivities was emcee Wolf Blitzer, CNN’s lead political anchor and host of “The Situation Room with Wolf Blitzer.”
Alzheimer’s Association President and CEO Harry Johns welcomed advocates from all 50 states by noting the many momentous victories of the past year, including the passage of the Alzheimer’s Accountability Act. This legislation will allow expert scientists at the National Institutes of Health (NIH) to directly communicate with Congress about the resources scientists need to achieve the primary goal of the National Plan to Address Alzheimer’s Disease: to prevent and effectively treat Alzheimer’s by 2025.
“This victory happened because of all of you — the best advocates any cause could hope to have,” Johns said. “Every single effort made a difference: a visit, a call or a letter to your elected official. An op-ed in your local paper or a post on Facebook. A meeting in your district or here in Washington. All of your actions were significant. All of them added up to this victory for those affected by Alzheimer’s, now and in the future.”
Bob Thomas, Alzheimer’s Impact Movement (AIM) treasurer and former member of the Association’s national board, presented the Alzheimer’s Association Humanitarian Award to Sen. Mike Crapo (R-Idaho), the lead Republican sponsor of the Alzheimer’s Accountability Act. The award recognizes public officials who have made a significant policy contribution to advancements in research and enhanced care and support for people with Alzheimer’s disease.
Crapo has firsthand knowledge of Alzheimer’s: His brother is in the late stage, and his wife’s mother died from the disease. He was grateful to be honored with the award but also deflected credit for his efforts.
“You’ve thanked me, but I want to thank you,” Crapo said. “(Passage of the Alzheimer’s Accountability Act) didn’t happen because I’m marvelous or that (co-sponsor Sen.) Ed (Markey) is marvelous. It happened because you are marvelous.”
Before introducing Rep. Peter Roskam (R-Ill.), who presented the Alzheimer’s Association Outstanding Advocate of the Year Award, Blitzer commented that Alzheimer’s disease advocates are having an impact in Washington.
“What you do is truly courageous and deserving of praise, from sharing your personal stories, to traveling to Washington, to all of the work you do in your home districts and states,” Blitzer said. “And your efforts are leaving an impression. People here in Washington are taking notice, just as I certainly have. In the crowded media marketplace, and even more crowded arena on Capitol Hill, it’s hard to break through and be heard. But you have, and I hope you will continue and even expand upon those remarkable efforts.”
Roskam spoke about meeting Advocate of the Year Cathy Perkowitz of Wheaton, Illinois, and her husband, Bill, who was diagnosed with younger-onset Alzheimer’s in 2006 at the age of 52. The couple kept up their friendship after Roskam was elected to Congress, and Perkowitz invited him to visit Bill at the care facility where he resides.
“Because of her invitation to see Bill, I was able to learn more, and the more I learned, the more I realized I needed to learn more,” Roskam said. “There’s a great temptation to take loss and be buried by it and defined by it and paralyzed by it. Cathy decided to do a different thing — she decided to redeem her loss.”
“This is such a great honor,” Perkowitz said. Her accomplishments include serving as an Alzheimer’s Association Ambassador, leading a top fundraising team at her local Walk to End Alzheimer’s® and participating in younger-onset caregiver support groups. “With my story and all our stories, we’ve been able to make a difference. The Forum provides so much energy to those with Alzheimer’s and their caregivers. There are many lonely moments dealing with this disease, but I’ve learned a lot on this journey.”
She also thanked her children, who were in the audience. “I want you to know how proud I am of Bill’s children: Nicole, Grace and Matthew,” she said. “They’re all success stories and they’re all part of Bill. I’m so proud that his children are here tonight to honor their father, who loved them more than anything.”
Thomas retuned to present the night’s second Humanitarian Award to Sen. Ed Markey (D-Mass.), a leader of Alzheimer’s issues on Capitol Hill. In addition to co-developing the Congressional Task Force on Alzheimer’s Disease, Markey was the lead House author of the National Alzheimer’s Project Act, the lead Senate sponsor of the Alzheimer’s Accountability Act and a cosponsor of the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act.
Markey announced that he and other bill sponsors will be reintroducing the HOPE Act. He said the legislation will give a new outlook to families diagnosed with Alzheimer’s.
“There’s something wrong in our country, and we’re going to change the way care is given to people with Alzheimer’s,” he said. “That’s what the HOPE Act is going to do.
“Failure is not an option,” he continued. “Our mission is to make sure that children look at history books to learn that there ever was an Alzheimer’s disease.”
Johns returned to present the Ronald and Nancy Reagan Research Award, which honors an individual who has demonstrated the courage and leadership shown by our former president and first lady in the fight against Alzheimer’s. This year’s recipient, Dr. Richard Hodes, director of the National Institute on Aging (NIA), is helping to make a real difference in the lives of millions of people.
Hodes, whose mother was diagnosed with Alzheimer’s in her 80s, pledged that NIA would continue to be “delighted partners” in undertaking research to combat the Alzheimer’s epidemic.
“The good news I can share is that there’s never been a time that research has been more exciting,” Hodes said. “People involved in this cause have created a new generation of hope to achieve the goal of putting an end to Alzheimer’s disease.”
Blitzer presented the Alzheimer’s Association Sargent and Eunice Shriver Profiles in Dignity Award, which recognizes individuals whose actions have promoted greater understanding of Alzheimer’s and its effects on diagnosed individuals, families and caregivers, to Lisa Genova, author of “Still Alice.” The book, detailing one woman’s journey with Alzheimer’s disease, was made into a film starring Julianne Moore, who won an Oscar for the title role.
When Genova was in her 20s and working as a neuroscientist, her grandmother had Alzheimer’s disease. Despite her background in medical research, Genova said she missed an opportunity when it came to her grandmother’s illness.
“I never asked her what it feels like to have Alzheimer’s,” she said. “Alzheimer’s is scary and depressing and tragic, but 5 million people have it and they have people that love them. It’s important to understand what it feels like. If we can understand what the disease feels like, we can stay connected with them for as long as possible.”
Genova added that she’s proud that “Still Alice” has played a role in bringing Alzheimer’s into the popular conversation.
“I wrote a book. It became a movie. It’s changing the world,” she said. “I want to thank all of you, because you’re all here making a difference and changing the world. Every single voice matters. Be heard.”
Blitzer concluded the event by wishing advocates luck on their visits to Capitol Hill on Wednesday.
“I’m inspired and impressed by all you have accomplished,” he said. “You’re unrelenting, passionate and informed about this cause and what it will take to end this disease. You’re prepared for your visits on the Hill and all of the expected and unexpected surprises that can come along with politics here in the nation’s capital. Better than any piece of paper or statistic or graph, you have your story — the one about how Alzheimer’s has affected your life and your family’s life. That story belongs uniquely to you and will leave an impression long after your visit.”
http://www.optimumseniorcare.com/services/alzheimerscare.php
NEW program! Alzheimer’s Research: Get Informed, Get Involved
Alzheimer’s Research: Get Informed,Get Involved is a series of education and awareness events brought to you by the Alzheimer’s Association®, Greater Illinois Chapter. These programs will feature local researchers who will discuss current trends, efforts and directions in dementia research. Information will be provided about the benefits of participation in research and local studies that are currently recruiting participants. Register today.
Alzheimer’s Research: Get Informed, Get Involved
Cost: Free
Alzheimer’s Research: Get Informed,Get Involved is a series of education and awareness events brought to you by the Alzheimer’s Association®, Greater Illinois Chapter. These programs will feature local researchers who will discuss current trends, efforts and directions in dementia research. Information will be provided about the benefits of participation in research and local studies that are currently recruiting participants. In addition, participants will be given the opportunity to enroll in the Alzheimer’s Association’s TrialMatch® program. Registration is required and space is limited, so please register today.
Wednesday, March 25, 6:00 – 8:00 p.m.
Rasmussen College-Romeoville/Joliet Campus
*Rooms 103 & 104
1400 West Normantown Road, Romeoville
Click here to register >>
Wednesday, April 1, 6:00 – 8:00 p.m.
Helen Matthes Library
100 East Market Ave., Effingham
Click here to register >>
Monday, April 6, 3:30 – 5:00 p.m.
Rockford University
Star Science Building Room 130
5050 E. State St., Rockford
Click here to register >>
Wednesday, April 22, 6:00 – 8:00 p.m.
Southern Illinois University
SIU Student Center, Illinois Room
1255 Lincoln Avenue, Carbondale
Click here to register >>
Thursday, April 23, 7:00 – 8:30 p.m.
Silverado Orchard Park Memory Care Community
5520 Lincoln Ave., Morton Grove
Click here to register >>
**Please check back soon for future program listings.
Alzheimer’s Association Greater Illinois Chapter Annual Research Symposium
Friday, October 23, 8:00 a.m. – 3:00 p.m.
Hamburger University and Hyatt Lodge at McDonald’s University
2175 Jorie Blvd Oak Brook, IL 60523
This full-day Symposium will focus on Alzheimer’s research, the leading role of the Alzheimer’s Association in dementia-related research, and the importance of participation in clinical studies. World-class researchers will be invited to the conference to discuss local, national, and global research with a special focus on translating research into care.
This Symposium is designed for clinicians, researchers, patients, families and caregivers and other professionals in the areas of healthcare, wellness and aging interested in connecting with others while learning more about Alzheimer’s disease research. Continuing education credit will be available for health care professionals. All participants will receive certificates of attendance.
Online registration will open soon.
http://www.optimumseniorcare.com/services/alzheimerscare.php