By Lisa Kiddon, The Longest Day staff partner, Alzheimer’s Association, Florida Gulf Coast
We know that you all love some ALZ swag, so you can show off how you are raising critical funds to fight the darkness of Alzheimer’s. You all work so hard all year long to raise these funds and you deserve recognition!
We have a great group of incentive prizes that you can earn based on your fundraising total. From packing cubes to an event folding chair and from sweaters to ray bans, we have some awesome branded items for you to show off your pride in being a part of the fight to #ENDALZ.
When you raise $1,600, you will become a Solstice Champion! The $1,600 signifies $100 raised for each hour of sunlight on June 20th. Set your goal to $,1600 so you too can be a member of this elite group of fundraisers.
By: Heather Parker, CPH, Program Manager, Alzheimer’s Association Southeast Florida Chapter
Thank you for joining us for the Longest Day, your personal fundraising event in support of the Alzheimer’s Association.
When most of us think of a local charity or non-profit organization we think of the research aspect, the white lab coats and microscopes that will help us find a way to prevent, treat or cure. While research is very important, did you know that there are many more ways that your dollar helps to blanket your local community with programs and services?
Right now, in a nursing facility right down the road is a person living with dementia. That person has been affected by this horrible disease and is no longer allowed to have family and friends visit due to COVID-19. Can you imagine losing memories and thoughts of family and friends and now not being able to see them in person? This is our current situation. Families, routines, friends and even basic necessities have been snatched from individuals.
The Programs staff and volunteers with the Alzheimer’s Association have hit this challenge head on. We offer many programs and services to assist the person living with the disease, and have tweaked our programs to fit into this virtual world.
One wonderful initiative that has come out of this tense time is Project VITAL. We have partnered with the Florida Department of Elder Affairs to provide our seniors in isolation an electronic tablet preloaded with games, music, movies, reading material and an easy to use video chat application so they can communicate with family. This program is breaking down the isolation wall inflicted by not only their dementia but also the current quarantine.
Programs at the Alzheimer’s Association such as face-to face support have quickly transitioned to virtual or telephonic. Our online education programs like Virtual Brain Bus and Virtual Caregiver College are offered weekly and available in English and Spanish.
Our statewide network of 200+ caregiver and early-stage support groups now take place over on a unique, confidential conference call or video line specifically assigned to their group.
As always, the 24/7 Helpline (800.272.3900) is available day and night for questions, advice, or just a friendly voice.
These programs would not be possible with out your dollars, blanketing our communities.
Here are some examples of your dollars at work.
$5 – provides 10 people with educational material about the disease
$20– provides a 30-minute personal care consultation with a caregiver or family dealing with dementia
$50– provides a 90-minute educational program about dementia
$100– provides a 90-minute support group for both caregivers and early stage sufferers of the disease
$500- provides one tablet for a person living with the disease to connect to their family
$1000- provides a full day event for the Brain Bus to come and educate the community on living with and caring for Alzheimer’s disease
By Emma Nestler and Carly Wille, staff partners for The Longest Day in Florida
The Longest Day is such a unique and creative concept because you can really choose to do whatever you want to fundraise for the Alzheimer’s Association. Yes, The Longest Day is based around the summer solstice but you have the flexibility to choose when, where and how you want to participate. All it really comes down to is honoring our caregivers and remembering those we have lost to this disease.
When COVID-19 started and we realized that The Longest Day will look a little different, we were not letting that stop our fight! We quickly came up with many virtual fundraising ideas and realized that most of the common The Longest Day activities has a virtual alternative.
Were you planning a bake sale at your office? Instead ask for donations in exchange for your baked goods and either drop them off or have them come pick them up from your house (safely of course). Another idea would be to do a virtual cake decorating contest via Zoom!
Was your event going to be at a local gym or fitness studio? Ask that studio to do a free class via Zoom and encourage people to make a donation in order to take the class or start a workout challenge with your friends & family!
Were you planning on having a game night like trivia? Virtual Trivia has become a very popular quarantine activity and so many teams across the country are hopping on Zoom to test each other’s knowledge to raise funds. Also, check out this team in California who hosted a virtual monopoly challenge.
Are you artistic or crafty? Put up your artwork or crafts as a silent auction or just ask for a donation in exchange through Facebook! Another idea would be to host a virtual paint party.
Were you planning a happy hour or a BBQ? Send out a recipe for a meal or a drink in exchange for a donation and gather virtually while you all enjoy the meal or speciality drink. There are tons of fun purple cocktail recipes on Pinterest!
If you aren’t liking any of the ideas we talked about, reach out to us for help! We can help you brainstorm.
The Longest Day has always been special because of how creative the fundraising ideas are. Alzheimer’s doesn’t stop for anything and we shouldn’t either.
Florida Contacts for The Longest Day
Central and North Florida Chapter: Carly Wille at firstname.lastname@example.org
Southeast Florida Chapter: Emma Nestler at email@example.com
Florida Gulf Coast Chapter: Lisa Kiddon at firstname.lastname@example.org or call (727) 270-9917
By Carly Wille, staff partner for The Longest Day, Alzheimer’s Association, Central and North Florida Chapter
After years of being involved with the Alzheimer’s Association, I’ve learned that the best way to get others to join in the fight for a cure is by sharing my personal story. Chances are that someone will relate to it or at least, be impacted by it.
When my grandma Jane was first diagnosed with the disease nearly ten years ago, there was a stigma surrounding Alzheimer’s disease. Not many people knew exactly what it was and if you did, you didn’t talk about it. We have come so far since then.
As the number of those diagnosed is quickly increasing and the cost of caring for someone with the disease is skyrocketing, Alzheimer’s disease is finally starting to become a topic of conversation and that is so important. The more that this disease is discussed and addressed, the better chance we have at beating it.
Each year, I talk about and share my family’s story throughout the month of June because June is Alzheimer’s & Brain Awareness Month. June is a fantastic time to share your story and talk about this disease and there are resources online to help you do so.
On June 1, I simply changed my Facebook Frame for Alzheimer’s & Brain Awareness Month and posted a small blurb about my grandparents with a link to my Longest Day fundraising page. Since that post, I have raised $300.00 and had multiple people message me via Facebook asking how they, too, can get involved.
I am challenging you to help raise awareness about this disease and this cause. Consider sharing your story on Facebook, Instagram, Twitter or whichever platform you prefer. Another way to get involved is by registering to take part in The Longest Day.
The Longest Day takes place on June 20 (the summer solstice) and on this date, people from across the country come together to outshine the darkness of Alzheimer’s disease. To learn more or register, visit alz.org/TLD.
On behalf of my family and the Alzheimer’s Association, thank you for allowing me to share my story. My hope is that by doing so, I have inspired someone to join us in our mission to end Alzheimer’s disease.
By Emma Nestler, The Longest Day staff partner, Alzheimer’s Association, Southeast Florida
Social media has become a crucial tool in fundraising in today’s society. People are using social media to connect with their families and friends across the world. It has been even more helpful during the pandemic by allowing us to stay connected through this difficult time.
Sharing your story and your fundraiser through various social media channels is a very important step to success. We even have easy tools through your participant center where you can just click a button and “BAM” your fundraiser is shared through Twitter, Facebook, Instagram, Linkedin and even Pinterest! On Instagram and Twitter, put your fundraising page link in your bio so it is easy for people to find. Post on “Your Story” with updates, tag and thank people who have donated to you.
The most effective social media fundraising tool is hands down the Facebook Fundraiser. Did you know that participants who use Facebook Fundraisers raise more than twice the amount of those who don’t? Make sure to start it through your participant center at alz.org/thelongestday and visit alz.org/FBVideo for a video step-by-step guide on how to set it up.
For a successful Facebook campaign, post updates along the way and make sure to thank your donors. You can even issue challenges through your fundraiser! I challenged my Facebook friends if I could raise $1,000, I would dye my hair purple. Guess what color my hair is now? PURPLE!
I challenge you all to start that Facebook Fundraiser today and share on any social media account you have. You will be surprised at how many people will be willing to support your fight to #ENDALZ.
As the United States continues in its efforts to slow the spread of the novel coronavirus, the illness has been presenting a unique set of challenges for the more than 5 million Americans living with Alzheimer’s and their caregivers.
Although Alzheimer’s does not necessarily increase one’s risk of contracting COVID-19, many of those living with Alzheimer’s are over the age of 60, which does pose an enhanced risk.
In this time of crisis, the Alzheimer’s Association is here to help all those affected by the disease by providing these essential COVID-19 tips and tactics:
Practice good hygiene. As always, remember to practice proper hand-washing during this time. Help those with dementia to remember to wash their hands as well, as many with the disease may forget.Consider placing signs in the bathroom and elsewhere to remind people with dementia to wash their hands with soap for 20 seconds. Alcohol-based hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing if the person with dementia cannot get to a sink or wash his/her hands easily.
Play gatekeeper with outside caregivers and guests. It’s critical that family caregivers carefully monitor who is coming into the home and to ensure all who enter are healthy. Be proactive in asking outside caregivers and guests about their current health status and make sure they are not experiencing any early or recent symptoms of illness. If your family member is in a residential, assisted-living or nursing home setting, do not visit if you have any signs or symptoms of illness.
Monitor sudden or sustained changes in behavior. People living with Alzheimer’s and other dementias may not be able to communicate if they are feeling bad and showing early symptoms of illness.
Be calm and create a nurturing environment. The current COVID-19 pandemic is creating added anxiety for everyone. Do your best to remain calm, particularly in your interactions with family members living with dementia. Oftentimes, these individuals will take their cues from the people who surround them. Creating a calm environment will help individuals living with dementia feel safe and protected.
Anticipate and prepare that current care and support options may change. As public health containment strategies for COVID-19 escalate during the next several weeks, it is important for families to anticipate that less help and support may be available. For example, many adult day care programs are shutting down temporarily during the crisis and home health services may also become less available. It is also important to discuss alternative plans for care management if the primary caregiver should become sick.
Ask residential care facilities about their communication policies. In order to protect the health of their residents, many facilities are restricting access to outside visitors, so it’s important to ask how you can get updates on your family member’s health and how you can communicate with loved ones during the current crisis. Ask to see if phone calls, video chats or even emails, will be offered and how best to coordinate. If your family member is unable to engage in calls or video chats, ask the facility how you can keep in touch with facility staff in order to get updates.
Check with residential facilities about their procedures for managing COVID-19 risk. The CDC has provided guidance to facilities on infection control and prevention of COVID-19 in nursing homes. Ensure staff have your emergency contact information and the information of another family member or friend as a backup.
Keep prescriptions filled. Caregivers may also want to ask their pharmacist or doctor about filling prescriptions for a greater number of days to reduce trips to the pharmacy.
Remember, although this period during the outbreak has caused a large amount of stress for many across the globe, taking these precautions can largely help you and your loved ones combat the disease. Keep these tips and tactics in mind as you care for those who rely on your assistance and for your own wellbeing.
As always, the Alzheimer’s Association is here to help you and your family take the necessary measures to prepare for and cope with these extraordinary circumstances.
For more information, visit alz.org or call the 24/7 Helpline at 800.272.3900.
Jessica is our executive director for the Central and North Florida Chapter of the Alzheimer’s Association. She joined us when a colleague told her “what an amazing organization this is,” and knowing the cause and mission, she made the move more than two years ago and hasn’t looked back.
What do you love most about what you do?
I love making a difference in people’s lives, having no cure just means we have to work harder to help those in need and to fund research so we can end this disease. I am also surrounded by an incredible team of co-workers who are just as dedicated!
What is a fun fact or something interesting about you?
I love football, reading, “Seinfeld,” boating and cooking with my husband, and my dog – well, all dogs!
Kaitlyn started with the Alzheimer’s Association in 2014 as a seasonal employee with development and has since become our staff accountant for Central and North Florida.
When asked what brought her to the Alzheimer’s Association, she said: “I always wanted to work somewhere that had a mission I was passionate about and that helped people. I also lost my grandmother to Alzheimer’s disease.”
What do you love most about what you do?
I love working for an organization that values its employees and also makes a significant impact in our community and across the nation. I also have a fantastic team of co-workers. We are more like a family than just another group of people who work together. We genuinely care about each other, and you can’t find that most places.
What is a fun fact or something interesting about you?
My family and I love all things Disney! We have annual passes and go to the parks almost every weekend! My son’s favorite ride is currently the Teacups.
If we aren’t at the parks, we can be found eating at one of their many resort restaurants! Even my mom loves it. She goes with us a lot of the time, but I think she just goes for the snacks! Disney has some of the best snacks in the world.
We especially love visiting the parks and resorts during Christmastime. The Grand Floridian resort is home to the largest Gingerbread House in the world! My family has been going to see it for years, and now we get to take my son. My 2-year-old son, Hunter, even got his first haircut on Main Street at Magic Kingdom! It truly is the most magical place on Earth!
(1) Text “FLBrainBus” to 52886 or visit here to take action today.
(2) This Tuesday (Feb. 25) post on Twitter and/or Facebook and tag key members of the appropriations committee to let them know you support the Brain Bus. For pictures, graphics and suggested messaging, visit here.
(3) Call their office to let them you support maintaining funding of the Brain Bus program.
Read on for more information including which key members to contact.
What is the Brain Bus?
The Brain Bus serves as a mobile outreach resource, providing valuable services to families in Florida, especially those without direct access to care.
Please maintain Brain Bus appropriations this year
The State’s Alzheimer’s Disease Initiative has $334,410 for the Alzheimer’s Association Brain Bus program. This program canvasses the state, prioritizing diverse populations that do not have direct access to care. It is a priority in the State Health Improvement Plan. It supports the BOLD initiative the Governor laid out in his Dementia Action Plan. Please prioritize Alzheimer’s and support the Brain Bus. Florida has the 2nd highest prevalence in the nation.
What can be done to support the Brain Bus?
Please reach out to Members of the House and Senate Appropriations Committee to request their support of the Alzheimer’s Association’s Brain Bus. This will allow the program to continue providing outreach and valuable services for one of Florida’s most vulnerable populations.
Alzheimer’s has a tremendous impact on the state of Florida.
Alzheimer’s is the 6th leading cause of death in Florida.
560,000 Floridians currently living with Alzheimer’s
Florida has the second highest prevalence of the disease among the 50 states
By 2025, the number of Floridians living with Alzheimer’s is projected to increase to 720,000
The state of Florida spends $2.6 Billion annually on Alzheimer’s and other dementias
1.2 million Floridians currently provide 1.29 billion hours of unpaid care for those living with Alzheimer’s or other dementias
The Brain Bus helps combat this impact.
The Brain Bus offers early detection and awareness education to better inform Floridians with a higher risk of developing Alzheimer’s of the importance of brain health, warning signs of the disease, and the benefits of an early diagnosis.
The Brain Bus provides training opportunities and other educational services to Alzheimer’s caregivers as they seek to provide the highest quality of care for their loved ones.
With a targeted focus on visits to underserved and rural areas of the state, the Brain Bus seeks to alleviate the effect of the disease on those Floridians less likely to have consistent access to educational, awareness, and training resources offered by the Alzheimer’s Association.
That’s the motto of 12-year-old Ryan Johnson, or “The Closer,” as he’s affectionately known among his fellow Alzheimer’s advocates, because when it comes to fighting for a cure, he means business.
Ryan, a seventh grade student at Innovation Way Middle School in East Orlando, will be the youngest advocate attending the annual Alzheimer’s Association Rally in Tally on Feb. 4-5, where he will meet with legislators to seek their support for his cause.
And he already has a plan for closing the deal.
“I’ll shake [the legislator’s] hand, and I’ll ask them, ‘So, what are you going to do?’” he said. “And then when they repeat it back, I’ll take a picture with them so that we have proof that they said ‘yes,’ they’re going to advocate for this.”
This year’s Rally in Tally will be Ryan’s third, after having attended the event in both 2018 and 2019. And at such a young age, one may wonder how he came to be so passionate about the cause of Alzheimer’s, but for Ryan, the answer is not a how, but a who: “My great-grandmother.”
After witnessing the strain and heartbreak his family members endured while caring for his great-grandmother with dementia, Ryan knew he wanted to use his voice to speak up for other families like his, and it was for that reason that when a fellow student and Alzheimer’s Association volunteer suggested he attend the Rally in Tally, he couldn’t wait to go.
“He bugged me for about a year before I let him go,” shared Ryan’s mother, Julie Shatzer.
As for where Ryan gets his passion for helping others, according to Julie, it runs in the family.
“Ryan actually has a family history of public service,” Julie noted. “His great-grandmother who had dementia was the director of volunteers at the hospital, and her husband was a city councilor up in Springfield, Massachusetts.”
And, of course, as the vice president of programs for the Florida Gulf Coast Chapter of the Alzheimer’s Association, Julie herself spends every day helping to provide resources and support to those affected by Alzheimer’s and other dementias, so the apple, it seems, doesn’t fall far from the tree.
Even so, when it comes to advocacy, Ryan has no problem stepping into the driver’s seat and steering the conversation toward those issues that matter most to those touched by Alzheimer’s.
“I would like government officials to start recognizing all these diseases out there that are hurting families — not just the people who have the disease but the people that are also being affected by the disease,” he said. “I want the government officials to open their eyes and see that and start helping.”
Ryan also added that he hoped to see more kids and young adults getting involved in the fight to end Alzheimer’s, noting, “It’s important to share your story. That’s what I’m going to do, and I hope others will, too.”