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Stay up to date with everything going on at the Alzheimer's Association Iowa Chapter from fundraising and events to programs to public policy with our quarterly volunteer newsletter. 

August 2020 

General I Fundraising & Events I Programs I Public Policy I Board of Directors
 

General

It goes without saying that 2020 has been challenging for our Association. The pandemic has altered the way we can deliver our care and support for those that utilize our services and it is negatively impacting our Iowa Chapter fundraising.

However, we continue to be blessed with what I believe is the most passionate volunteer base in Iowa. Thanks to the energy and drive of our volunteers, we have made the necessary transition to virtual program engagement, have moved forward with our upcoming Walk season with “Walk is Everywhere,” continue to have key conversations with our elected officials and had the most successful Longest Day campaign to date. None of this occurs without our volunteers taking the lead with a positive attitude and a “can-do” spirit.

I hope you find this newsletter to be informational and worthwhile. Feel free to give me your thoughts at dabickford@alz.org. Thanks for all you do to help us achieve our Vision: A world without Alzheimer’s and all other dementia.

- Doug Bickford, Executive Director, Alzheimer's Association Iowa Chapter


Fundraising & Events

Walk to End Alzheimer's®
As you may know, our Walk to End Alzheimer's is going to look a little different this year. Your health and safety are our top priorities, so we aren’t having a large in-person gathering this year — instead; we invite you to walk in small teams of friends and family while others in your community do the same. No matter where you’re walking, we’re all still working toward the same goal: a world without Alzheimer’s and all dementia.

We’ve created an experience that captures everything you love about Walk — plus fun new surprises, including:

  • Colorful flags we're sending you to show your commitment to the cause. Display them in your yard or windows, and carry them with you when you walk!
  • Walk Mainstage, a virtual experience where you can visit sponsor booths, connect with other participants, top fundraisers and VIPs, and learn about Association resources.
  • An opening ceremony that you can watch online before walking on your local sidewalk, track or trail.
  • An updated Walk app with new features so you can track your steps and hear messages of support as you walk.

The world may look a little different right now, but one thing hasn’t changed: your dedication to ending Alzheimer’s. We’re grateful for you and all you do to advance the fight.
If you haven't already, register for your local Walk today here. If you have registered, start growing your Walk team, set a goal and start fundraising.
*** This year, in order to get your t-shirt in time to wear for Walk, make sure you raise $100 at least 4 weeks out from your local Walk.

The Longest Day®
On June 20 – the summer solstice and the day with the most light – Iowa residents joined thousands of advocates from across the world to participate in The Longest Day. We are excited to announce that statewide The Longest Day campaign raised $100,000! This year, given the COVID-19 crisis, many The Longest Day participants chose to support the event “virtually” through “at-home” and “social-distance” activities -- biking, hiking, playing bridge, knitting and more -- to raise critical funds and awareness to advance Alzheimer’s Association care, support and research programs.

Several Iowans decided to take to their bikes and raise money through individual and socially distanced rides. Reed McManigal, a Des Moines resident and Board Member for our Iowa Chapter, rode his bike 150 miles from Des Moines to Mason City and raised almost $24,000! Volunteer Amanda Pins and her family held their 6th annual Bikes for Brains ride with 6 different routes to choose from to allow for social distancing, and they raised over $19,000!

Others across the state raised money by golfing, running, "flocking" - placing purple plastic flamingos in resident front lawns and asking for donations to remove them, virtual paint and sip parties and more. 

Though we celebrate The Longest Day on June 20, we also encourage supporters to hold fundraisers throughout the year to help raise awareness and fight the darkness of Alzheimer's disease and other dementias. If you'd like to sign up for The Longest Day, become a volunteer for the statewide, The Longest Day Planning Committee, visit thelongestday.org

Wine & Chocolate Festival - One Click Away
On August 13 we held our first virtual Wine & Chocolate Festival which live streamed to almost 600 people across Iowa and beyond. Together, we raised $150,000 through sponsorship, donations and the auction. Thanks to everyone who supported this event which helps families affected by Alzheimer's, supports caregivers through free support groups, care consultations and community education and funds research so we can get closer to our vision of a world without Alzheimer’s and other dementia.

Memorials
The Alzheimer’s Association, Iowa Chapter was the recent recipient of a planned gift from the estate of Barbara Strang. Barbara passed away from Alzheimer’s in March 2020 at the age of 87. Her daughter, Mary Beth Guillaume, was Barbara’s primary caregiver during the six years she lived with Alzheimer’s.  
After caring for her mom, Mary Beth better understands the challenges faced by those living with Alzheimer’s and the effect on family members involved with their care. Barbara decided to make this donation to the Alzheimer’s Association so others in a similar situation would be able to utilize the Association’s programs and services available to those impacted by the disease.

For more information on making a donation or arranging for an estate gift directed to the Alzheimer’s Association, call 319.238.7648 or go visit our Planned Giving page.

 

Programs

The safety of our staff, volunteers and constituents continues to be our primary concern. Of particular concern is the vulnerable group of constituents we serve. As we know, COVID-19 has disproportionately affected older adults and our minority communities. While you might not have had many cases in the area where you live, the Association nationwide continues to follow Centers for Disease Control, state and local health department guidance. 

We continue to take all reasonable precautions to keep staff, volunteers and constituents safe. Our offices are still closed. And, until we feel it is safe to do so, we will continue to deliver all programs virtually. Due to the vulnerable nature of our constituents, no in-person programs or meetings/events are allowed or authorized, even if your community has re-opened. Any unauthorized programs or in-person events pose a health and safety liability risk. 
We appreciate your patience and understanding as we carefully examine options to safety deliver our programs. We are deeply grateful for your support in continuing our mission during these uncertain times. Please continue to share your thoughts with your staff partner. We’re happy to discuss this with you at any time, and we will keep you notified as the Association determines a path forward and revises guidance for all staff and volunteers.

We continue to see an increase in the number of support groups meeting virtually through conference calls or in platforms where constituents can see one another (like Zoom, for example). This has been wonderful to see, as new people in our communities are joining us who could not do so in person, or are just finding out about our support groups for the first time. If your support group is currently not meeting and you'd like to explore how we can help make it virtual, please contact your staff partner.

We continue to be available for one-on-one meetings or family meetings as a support system for you, and we can do this over the phone or through Zoom. This has always been, and will continue to be, an important service we offer to the community. Please know that we are happy to schedule these at any time if you know of someone that could use someone to listen or perhaps has questions. Likewise, if you hear of someone needing additional information about the disease or partners to help navigate the disease, please refer them to your staff partner.

Lastly, since late spring, we've offered free virtual community education programming. We have 14 different programs designed for anyone in the community to learn more about topics from staying healthy, warning signs, communication, legal and financial, the stages of dementia, and even a new program on caring for someone and COVID-19. We offer a variety already scheduled monthly, and we would be happy to discuss scheduling a presentation for an organization or company at any time. Offering these programs virtually has allowed for us to reach even more people than we did in person!

For a list of upcoming support groups or education programs, please check out our Programs Event Calendar

Public Policy

The Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) have made public policy a high priority for the organization.  In 2011, Congress passed the National Alzheimer’s Plan with the goal of finding a treatment or a cure for Alzheimer’s disease by 2025 and since then, Congress has increased funding for Alzheimer’s research at the National Institute of Health each year. Alzheimer's research funding for FY 2020 is now at $2.8 billion. 
 
The Alzheimer’s Association has also made public policy a priority in each state, working to ensure that every state has a state plan and implementation timeline. Throughout the pandemic, we are also working to ensure that those living in long term care settings are receiving the protections they need to stay safe. 

State Policy
The Iowa Legislature came back to the Statehouse on June 3, 2020,  They had a shortened session to mostly pass the budget and a few other bills. The bill that was promoted for passage at the Alzheimer’s Association Day on the Hill, HF 2269, was signed by the Governor. HF 2269 increased the monthly Medicaid Elderly Waiver so that more elderly can stay in their homes.

Advocacy
The Alzheimer’s Association values a strong and active Federal Advocacy Program. Each state policy coordinates an Ambassador program that links a lead advocate with each Member of Congress in the state. With the start of the new fiscal year, we are updating our Ambassadors to ensure that they are willing and able to serve another year. If you are interested in becoming an ambassador, please fill out this volunteer form.

In addition to the Ambassador program, each Member of Congress has an Alzheimer’s Congressional Team (ACT), which assists the Ambassadors with developing relationships with their Members of Congress. Because of the pandemic, we are currently recruiting ACT members geographically in conjunction with their Congressional office. If you are interested in becoming an ACT member, please fill out this volunteer form. 

State Advocacy
This year, we will also be recruiting advocates to be State Champions for key Legislators across the state. These State Champions will establish a relationship with House and Senate Members in Leadership and key committee Chairs. If you know your House or Senate member and would like to become a State Champion, please email our Public Policy Director, Robyn Mills at romills@alz.org
 
Federal Policy 
The National Alzheimer’s Association and the Alzheimer’s Impact Movement are currently involved in three separate campaign priorities: 

  1. Stimulus Campaign: 
Congress is now working on a fourth stimulus package. The goal is to advance three key federal priorities that will impact millions of families affected by Alzheimer’s and other dementias and on the Associations ability to serve them: 
 
  • The Promoting Alzheimer's Awareness to Prevent Elder Abuse Act
  • The Improving HOPE for Alzheimer's Act
  • A provision to expand access to credit for nonprofits like the Alzheimer's Association to continue to serve our constituents' needs
StatusAs Congress works on the fourth economic relief package, the Alzheimer's Association is continuing to ask that they consider adding these measures to the package. The House passed the HEROs Act, a $3 trillion dollar package in May, but the Senate did not consider it. The Senate may begin working on a bill at the end of this month as the extra $600 per month unemployment income will end for many Americans. 

None of the provisions that were advocated for by the Alzheimer’s Association were part of the HERO’s Act. However, movement has been made on two of the priorities in separate bills. 
 
  • The Promoting Alzheimer's Awareness to Prevent Elder Abuse Act (S. 3703/ H.R. 6813) has been introduced in both chambers as a separate bill. Senator Grassley is a co-sponsor. Congresswoman Axne has agreed to co-sponsor the House bill.
  • The Improving HOPE for Alzheimer's Act (S.880/ H.R.1873) has also been introduced in both chambers as a separate bill.
  1. Appropriations Campaign
In a normal year, this would be our advocacy ask for the Federal FY 2021.  The House and Senate Appropriations Committees are beginning to mark their bills and hope to have them ready for debate at the end of July. 
 
The Alzheimer’s Association is targeting the members of the U.S. Senate Appropriations Committees and asking those members of Congress to:
 
  • Increase the commitment to Alzheimer’s and dementia research by including an additional $354 million for Alzheimer’s research activities at the National Institutes of Health (NIH).
  • Fund the Alzheimer’s public health infrastructure by including $20 million to implement the BOLD Infrastructure for Alzheimer’s Act at the Centers for Disease Control and Prevention (CDC) in Fiscal Year (FY) 2021. This bill passed last year allocating $100 million over 5 years to the effort.  However, last year, BOLD was only funded at $10 million. 
This is the beginning of our annual priorities ask of Congress for the Federal Fiscal year beginning October 1, 2020. The campaign will broaden as the bills move through Congress.
 
Status: On Monday July 13, the House Appropriations Committee amended and approved its Fiscal Year 2021 Labor-HHS-Education spending bill, 30-22. The bill is now headed to the full U.S. House of Representatives for a vote. It is expected that the vote will occur prior to the August recess. As a reminder, it did not include our ask of an additional $354 million. With this House action completed, our efforts will now shift to a focus on Senate Appropriations. 
 
Advocate Actions on Appropriations:
Advocates can use this phone to action to ask their Senators to support increased funding for  Alzheimer’s research to the NIH. 
 
  1. Long Term Care Campaign
This campaign was developed at the national level in response to protecting those living with dementia in long term care facilities. The Alzheimer’s Association is urging policymakers to implement new policy solutions that will address the immediate and long term issues impacting care facilities during the COVID-19 pandemic, including:
 
  • Testing - enhance testing in community settings (universal testing)
  • Reporting - implement necessary reporting
  • Surge Activation - develop protocols to respond to a rise in cases
  • Support - ensure all facilities have the necessary equipment (i.e. PPE) 

Iowa’s response thus far to COVID-19 outbreaks at long-term care facilities has been reactionary. Only those that have 3 or more confirmed cases are counted as being an outbreak. That being said, once there is an outbreak, the response is pretty strong, and Iowa’s detailed reporting of facilities affected and numbers infected is significant. Still, 50 percent of the COVID-19 deaths in Iowa are those living in long-term care.
 
We have been working with some community partners to get the Legislature and the Executive Branch to become proactive with long-term care facilities, starting with universal testing. This will be incredibly important as the facilities begin to open up to the public.  The Iowa Department of Public Health and the Iowa Department of Inspections and Appeals issued a three-phase plan to re-open long term care facilities. We believe that these measures need to be put in place to ensure the safety of those who live. 

Board of Directors

On July 1, 2020, Richard Dedor of Des Moines stepped into the leadership role as Board Chair for the Alzheimer’s Association Iowa Chapter to serve a two year term. Dedor replaces David Storey of Swisher who served two years as Chair.
 
The Iowa Chapter Board of Directors currently has 22 members, including 5 new members from across the state. The new Board Members are:

  • Suzanne Behnke, Urbandale – Executive Director and Editor at The Iowa Center for Public Affairs Journalism - IowaWatch.org
  • Tim Bianchi, Urbandale – Owner of Trilogy Solutions & President of Avail Professional Services
  • Cari Gregg, Des Moines – Relationship Manager at Wells Fargo
  • Scott Maiers, Coralville – Marketing for Grand Living at Bridgewater
  • Dr. Niyati Sharma, Hiawatha – Medical Director Unity Point Wound Healing and Hyperbaric Center

The purpose of the Alzheimer’s Association Iowa Chapter Board of Directors is to provide leadership to fulfill the mission of the Alzheimer’s Association by partnering with staff in building relationships with key organizational stakeholders to enhance concern and awareness for Alzheimer’s disease, drive revenue generation, advance advocacy initiatives, accelerate research efforts, and provide care and support to those impacted by Alzheimer’s disease and other dementia.

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