Relieving Guilt Through Action

To continue in the theme of Alzheimer’s and Brain Awareness Month, one of our members, Annie Hutter, shares an incredible, honest look into the effects the disease has had on her and her family on a very personal level as well as how getting involved in the fight to end Alzheimer’s with the Junior Committee has given her a new sense of hope.

Annie Hutter (2)About Annie: Annie is a Senior Financial analyst for DHL Supply Chain. Her dad started showing signs of Alzheimer’s at age 55 (about 10 years ago) and was diagnosed a few years later. He still lives at home with her mom in Chagrin Fall, Ohio (a suburb of Cleveland). Annie is a very active member of the Junior Committee. She traveled to Washington, DC in April for the Memory Forum to participate in the battle for increased Alzheimer’s funding and research. She is also tackling Alzheimer’s through Blondes vs. Brunettes.


I am 30 years old and live in Columbus with my husband and our cat.  Life for the most part is fantastic, full of many blessings. But for the past 10 years there has been a black cloud of sorrow over me as I’ve watched my wise, productive, and full of life father be slowly stripped of himself due to Alzheimer’s disease. Watching the person you once turned to for all your advice and guidance become unable to complete a sentence or make a sandwich is a tragedy I do not wish upon anyone. The pain I feel for my parents is something that is always present. My dad’s health is declining every day, and his dependence on my mom, his caregiver, is increasing every day.

In addition to the amount of pain that comes from watching this happen to my parents, there is an extreme amount of guilt. Guilt that before we knew of my dad’s disease, I was impatient with his struggling memory and at times still am; guilt that there is nothing I can do to delay, treat, or cure his disease; guilt that my mom (who lives in Cleveland) is largely taking on my dad’s care by herself while I am in Columbus living each day with an independence she hasn’t known for the last 5 years; guilt that I’m not spending enough time with my dad while he can still communicate. The list goes on. I tried to rid myself of this guilt by making trips up to Cleveland as often as possible, but with a full time job, a house, and responsibilities in Columbus, there is never enough time.

It wasn’t until discovering the Junior Committee of the Alzheimer’s Association that I was able to curb some of this guilt through action. Upon joining the committee in the Fall of 2015, I was armed with knowledge, fundraising opportunities, friends who can relate firsthand to my experience, and advocacy opportunities. My husband and I traveled to Washington D.C. in early April to advocate for more federal funding and the support of Alzheimer’s related bills. This summer I am playing in a flag football game, “Blondes vs. Brunettes” to raise money for the association. I am also on the Gala committee for Paint the Night Purple, taking place this fall. For the first time in the past 10 years, I don’t feel helpless anymore. And I don’t feel hopeless. Even though I am not a researcher, doctor, or government official; the Junior Committee has empowered me to get involved and fight.  Fight for more money, more resources, and more attention.  Getting involved with the fight has opened my eyes to see how many others are fighting for the same thing. I am confident that our efforts will bring an end to this disease in my lifetime.

Is all my guilt gone? Of course it’s not; it never will be. But there is less because I am taking action rather than just watching from the sidelines. And while none of this action will directly help my dad, my hope is that it helps prevent future families from the tragedy of Alzheimer’s disease.  And in all of this, I know I am honoring my dad, who lived his first 55 years of life building, fixing, helping, and creating; and who never let a day go by with an attitude of indifference.

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Where’s Our Cure to Alzheimer’s Disease?

In honor of Alzheimer’s and Brain Awareness Month, one of our amazing members, Maya Gosztyla, explores the state of Alzheimer’s research in our latest blog post.

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About Maya: Maya Gosztyla is a rising junior at the Ohio State University, where she is pursuing her B.S. in Neuroscience and Molecular Genetics. She has been involved with the Junior Committee since June 2015 and also serves as the Community Outreach Chair for a campus organization called Buckeyes Against Alzheimer’s. Following graduation, Maya hopes to earn her PhD and work as an NIH researcher studying ways to cure or prevent dementia.

 

 


Biomedical research has made great strides in the past several decades. Our death rates for most major diseases have decreased significantly, including heart disease, cancer, stroke, and HIV. However, one conspicuous exception to this trend is Alzheimer’s disease, for which total deaths increased by 71% between 2000 and 2013. Why does research on Alzheimer’s disease seem to be bearing meagre fruits, and when can we expect the next breakthrough?

To answer these questions, we need to have a bit of background on the science of the disease. Alzheimer’s disease is differentiated from other types of dementia by the presence of abnormal protein deposits in the brain known as amyloid beta (Ab) plaques. Several studies have demonstrated that genetic mutations that increase production of the Ab protein increase the risk of developing Alzheimer’s, while a rare mutation that decreases Ab production is protective against Alzheimer’s. This led most researchers to adopt the amyloid cascade hypothesis, which proposes that the gradual accumulation of Ab in the brain is the main cause of Alzheimer’s disease. This hypothesis suggested that a cure to Alzheimer’s lay in discovering a drug that could prevent or reverse the build-up of Ab plaques.

Between 2002 and 2012, more than 400 drug candidates were discovered that could dissolve Ab plaques in mice. However, despite these promising results, the drugs consistently failed in human clinical trials. The patients’ symptoms improved only marginally, if at all. Even worse, many drugs came with a host of severe side effects, including skin cancer, gastrointestinal problems, and micro-hemorrhaging, which forced the trials to be canceled prematurely. Hundreds of millions of dollars were spent searching for new ways to destroy the plaques, yet each new drug met the same fate.

Following this torrent of failed clinical trials, some researchers began to wonder if there was a serious problem to the way we were studying Alzheimer’s disease. The long-dogmatic amyloid cascade hypothesis was brought into question when new studies showed that nearly 1 in 3 cognitively normal people have high levels of Ab in their brains, suggesting that the plaques could not be the only factor contributing to dementia symptoms.

The scientific community was initially slow to react to criticisms of the amyloid cascade hypothesis. However, in recent years, new areas of research have begun to open up that consider new mechanisms for Alzheimer’s disease development. Many exciting theories have been suggested, including the tau protein, neuroinflammation, microbial infection, mitochondrial dysfunction, and oxidative DNA damage, among others. It’s likely that all of these factors, in conjunction with Ab accumulation, contribute together to this complex disease.

With this new generation of neuroscientists approaching the problem with a fresh perspective, it’s likely that our understanding of Alzheimer’s will be radically transformed in the coming years. Though it’s impossible to predict exactly when the next breakthrough will come, the scientific community’s shift away from the amyloid cascade hypothesis toward more nuanced theories will bring our search for a cure that much closer.

The Man Who Wasn’t There: What Exactly is Alzheimer’s Disease?

In this post from Dogwood Forest Assisted Living Community, we explore how the deterioration of the brain through Alzheimer’s begins to affect personality and who an individual is. This is a repost from Dogwood Forest where it was originally shared by Kia Crawford on their blog in April 2016.

About Kia: Kia Crawford graduated magna cum laude from Florida A&M University with a Bachelor’s degree in Journalism with a concentration in Public Relations. She also holds a Masters of Public Administration degree. Kia began working in the senior living industry in 2006. She has worked as marketing coordinator, community relations director, and is currently the Corporate Communications Director for Trinity Lifestyles Management, an assisted living management company based out of Alpharetta, Ga.


No doubt you’ve heard of Alzheimer’s Disease. It causes memory loss and slowly destroys the brain. There have been vast leaps forward in the prevention and treatment of this disease recently as we begin to understand it more. There have also been new, fascinating  breakthroughs in understanding exactly how it really affects the brain and all aspects of the mind.

In The Man Who Wasn’t There: Investigations into the Strange New Science of the Self, author Anil Ananthaswamy explores how different conditions, from Alzheimer’s to out-of-body experiences, affect the concept of the Self. That is, if the concept of the “Self” even exists. Through investigations of different parts of the mind and ideas like the human narrative, Ananthaswamy reveals what Alzheimer’s actually is and how it affects our minds.

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Alzheimer’s disease was first classified in 1906, named after psychiatrist Alois Alzheimer, the German doctor who discovered it. He had a long-term patient named Auguste. She had severe memory loss and suffered from progressive cognitive impairment, hallucinations, delusions and other symptoms we now often associate with the disease. However, Alzheimer did not just stop his diagnoses on the surface level. He delved deep into Auguste’s mind — literally — to fully understand what was causing the disease.

Alzheimer had slivers of Auguste’s brain sent to his lab. There, he examined them, and what he found was startling. The cells of her cerebral cortex showed abnormalities not found in healthy brains. While Alzheimer did his best to describe these strange cells, we now use the terms neurofibrillary tangles and plaques of beta-amyloid protein. In other words, neurons begin to degrade, and a strange protein builds up around the area, further blocking messages between brain cells. As both these issues progress, Alzheimer’s disease takes hold.

THE HUMAN NARRATIVE

One of the tell-tale signs of Alzheimer’s disease is memory loss. Patients tend to lose a part of their short-term and/or long-term memories. It is these moments in their life they no longer remember that form their life’s narrative. This is their story, the tale of how they became the person they are now. And, in consequence, this is what defines the Self. As some describe it, it’s like “somebody you grew up with disappears before your eyes.” And as that narrative is eroded by lost memories, it’s as if those afflicted are “drifting towards the threshold of unbeing.”

But it’s not just memory that is affected by this horrific disease. As different parts of the brain begin to deteriorate, your personality — in some ways, the center of the Self — also crumbles. One patient, a once brilliant and kind-hearted man, began suffering extreme mood swings. A small argument with his wife would send him storming from the house, slamming doors as he went. He would constantly write notes riddled with obscenities, aimed at his wife.

Perhaps the most telling change was the fear the patient presented. He read books regarding assisted suicide, and often asked his wife to make sure he never got to the point of needing adult diapers or to be in a nursing home. As his wife puts it, his brilliance was a double-edged sword. He was losing the thing he valued the most: his brain, his intelligence. In essence, Alzheimer’s was stripping him of who he was.

THERE IS HOPE

There are countless stories out there similar to this that reveal just how devastating it is for a person to lose what it is that makes them uniquely themselves. Many of these stories, in addition to glimpses into many different diseases and disorders, are beautifully articulated in Anil Ananthaswamy’s book. However, these stories of Alzheimer’s patients may soon be confined to medical history books, alongside the Spanish flu and smallpox. Modern medicine is on the war path toward achieving a goal once thought impossible: eliminating Alzheimer’s.

shutterstock_138838457One of the most significant recent breakthroughs involves early detection. Scientists are working toward a way to detect those protein plaque buildups very early on and, in doing so, preventing Alzheimer’s from every developing. There are many different methods being tested right now, from blood draws to brain scans. But scientists believe if they can catch these symptoms before they start affecting the brain, they can provide treatment to keep the disease at bay.

There are many different ways the plaque could be combatted. One such way is to bolster the immune system, allowing it to more efficiently fight against beta-amyloid protein from ever clumping. Another way is to prevent the plaque from affecting the brain, even if it does develop. This is done by blocking interaction with another kind of protein called Fyn. When these two proteins work together, the brain begins to deteriorate.

Scientists are also working toward preventing neurofibrillary tangles. We have learned that such tangles are caused by a “malfunction” of the Tau protein. Tau is responsible for giving neurons their shape and structure. There is an abnormal kind of Tau that, when it collapses, twists into tangles. As they do so, they slowly destroy structures within the neuron, called microtubules, and eventually destroy the cell itself. Researchers are developing drugs that attack this abnormal Tau to allow the neuron to keep its shape.

You can learn much more about all the ways researchers are working toward defeating this disease for good at theAlzheimer’s Association website. The most important thing you can do if a loved one is diagnosed is to simply support them. Make sure they know you care, and that they are not alone in this fight. Show them love, patience, and understanding. Show them that they are still connected with you, the family, and the world. Together, you may be able to preserve those special moments and the unique personality that makes them uniquely themselves.

Millennial Generation Moon Shot

As a millennial, how can you help find a cure for Alzheimer’s disease? One of our members, James Balch, challenges our generation to take action toward ending Alzheimer’s.

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About James: James is an active member of the Junior Committee. Professionally, he is a consultant for Pemco & Co, LLC. His aunt suffers from Alzheimer’s disease.

 

 

 

 


Before I go into depth about my call for a moon shot for Alzheimer’s disease, I think it is important to share my personal story. My aunt is suffering from Alzheimer’s disease. It started with memory loss and the symptoms increased from there. The ironic part is that her husband and one of her sons are cancer surgeons where surgery or radiation can send cancer into remission, yet there is no solution for Alzheimer’s disease. Even as the disease has progressed, I continue to be impressed and touched by the courage she has in not letting the disease stop her from living. Also, I have seen her family give her love and strength as she gave to them for so many years.

As previous generations have brought awareness and billions of dollars to cancer research, we have the opportunity to make people aware of a forgotten disease that affects 5.4 million people every year. Alzheimer’s disease needs a call to action. The biggest issue that this disease brings is that there is no clear cure yet, but that does not mean we should not fight for the funding in research to accomplish that goal no matter how challenging it is. I am proud to be a millennial because when we hear it cannot be done, we activate our community to make the impossible the possible.

The pieces are there with increasing research capabilities to study the brain to further understand Alzheimer’s and alleviate its affects, but our generation needs to educate our fellow members in the community who can bring increasing awareness to take action. A movement can be born to show policy makers why Alzheimer’s research funding can be part of his or her legacy.

I am writing this blog post to call for a moon shot. Currently Alzheimer’s disease receives less than a tenth of the funding that cancer receives. I challenge our generation to bring continued awareness and give our political leaders the momentum to reach the $2 billion per year goal in Alzheimer’s research that researchers have stated is necessary to treat or prevent this deliberating disease. By activating our generation, we can crush this goal. Already Presidential Candidate Hilary Clinton has supported the $2 billion goal and several members of both parties have supported increased funding for Alzheimer’s disease.

The question becomes how this is done. Similar to politics where the strongest candidates have the best ground game, Junior Committee members supporting the Alzheimer’s Association from this generation have the greatest opportunity to educate our fellow millennials on how Alzheimer’s disease affects them and their loved ones. It can be as simple as each member speaking to five friends about the disease and challenging them to educate five other friends. Rather than just talk about the disease, you can talk about steps to keep the brain active and why brain health is just as important as physical health. Quickly this can become millions of people behind Alzheimer’s research and a political force is created. This is a simple example, but the passion of our members can truly make curing Alzheimer’s our moon shot.

 

Recapping this year’s Alzheimer’s Advocacy Forum

Earlier this month, the Junior Committee sent a group to DC to paint Capitol Hill purple for the Alzheimer’s Advocacy Forum. Our Education and Advocacy Chair, Hayley Jones, recaps the experience here!

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About Hayley: Hayley Jones has been an active member of the Junior Committee since February 2013 and is currently serving her second term as the Education and Advocacy Chair.  She is a 2011 graduate from The Ohio State University where she received her BA in Strategic Communication. In her free time, she enjoys spending time with friends and family and planning her upcoming wedding! Hayley’s mom passed away from Alzheimer’s in November 2013 and she is passionate about ending Alzheimer’s and living in a world where there are survivors.

 

 


 

In 2013, I was asked to attend the annual Alzheimer’s Advocacy Forum in Washington D.C. by Ty Pier, the Advocacy Board member on the Junior Committee. At the time, I was excited for the opportunity, but I didn’t think my attendance would make a difference. How could my story change the way our leaders fund Alzheimer’s research? Is Alzheimer’s really THAT big of a deal?

Alzheimer’s is THE most expensive disease in America. It IS that big of a deal.

During my first trip to the forum, we asked Congress to pass the Alzheimer’s Accountability Act. This would require Congress to work with the National Institute of Health to come up with a realistic budget for research. Up until this point, Congress had been creating budgets without any knowledge of how much money was actually needed. I was shocked. You’re telling me that Congress controls the money we need for a cure, but they haven’t asked anyone how much a cure would cost? That will never work!

A few months after the forum, we learned that the Alzheimer’s Accountability Act passed through the House and Senate and President Obama had signed it. WE DID THAT. I DID THAT. I had a part in making Alzheimer’s history. My story, along with the stories of 900 people from across the country, made a difference.

Fast forward to 2016: I just got back from attending my third forum! This year, I was given the great honor of representing the entire state of Ohio during the opening night roll call ceremony.

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This year, we had ten members of the Junior Committee attend the forum, which is more than we’ve ever had attend before! Each of us earned scholarships from the National Association by attending additional meetings with our members of Congress here in Ohio. While in our congressional meetings, we had three specific “asks” for our leaders.

Our first ask was for an additional $400 million for research during fiscal year 2017. $400 million will bring us closer to the total of $2 billion we need each year to find a cure by 2025. As of today, we receive just under $1 billion.

Let’s go over a few facts and figures about current research and dollars:

  1. Alzheimer’s disease is THE most expensive disease in America.
  2. Alzheimer’s disease is the 6th leading cause of death but the only one that doesn’t have a prevention, cure, or way to slow it down.
  3. In 2016, Alzheimer’s and other dementias will cost the nation $236 billion.
  4. $160 Billion in Medicare and Medicaid dollars are spent on those living with Alzheimer’s.
  5. Only $991 million are spent on Alzheimer’s research.

Our second ask was for all of our leaders to sign onto the HOPE for Alzheimer’s Act. The HOPE Act would ensure doctors provide a care plan for any new diagnoses of Alzheimer’s. Care planning is crucial to improving the outcome for the individual and their family. The HOPE for Alzheimer’s Act would also ensure the dementia diagnosis and the care planning are documented in the medical record.

A few facts and figures about the HOPE to Alzheimer’s Act:

  1. Will reduce Medicare costs associated with caring for people with Alzheimer’s disease.
  2. Builds upon existing Medicare coverage of a diagnosis and would provide the time doctors say they need to talk to their patients about an Alzheimer’s diagnosis.
  3. Over a 10 year period (2016-2025), a care planning benefit would reduce federal spending by a total of $692 million.

The last ask was for a new bill referred to as PCHETA (Palliative Care and Hospice Education and Training Act). Palliative and hospice care, with a focus on easing symptoms and reducing pain and stress, and increasing comfort, can improve both the quality of care and life for those with advanced dementia.

A few facts and figures about PCHETA and Alzheimer’s disease:

  1. Up to half of dementia patients have documented pain in the last weeks of life
  2. Dementia patients who receive palliative care at the end of life are 15 times less likely to die in a hospital.
  3. Families of individuals with dementia who are enrolled in hospice have a greater satisfaction with patient care.

Our trip to the 2016 Alzheimer’s Advocacy Forum was an absolute success. We met with staff for Congressman Stivers, Congressman Tiberri and Congressswoman Beatty and they were all very receptive to us. Congressman Stivers and Congresswoman Beatty have already signed onto the HOPE for Alzheimer’s Act and the PCHETA Bill.

On top of learning more about Alzheimer’s and advocacy while at the forum, we had FUN! We got to share our documentary, Elephants in the Room with other young professionals from across the country, we shook hands with Senator Rob Portman, and we walked all over our great Capitol sharing our passion to End Alzheimer’s!

For additional information about this years “asks”, please read more here.

If you’d like to join us in DC next year, please contact Hayley Jones (Hayley.Alzcbusjc@gmail.com).

Crowdfunding 101

Whether you’re raising money to attend the National Alzheimer’s Forum in DC next month, fundraising to play Blondes vs. Brunettes or looking for some tips for your Walk to End ALZ team, these valuable crowdfunding tips can help!

Our very own Central Ohio Junior Committee Board Chair, Kristin Dahlquist, shares how crowdfunding has helped her and other JC members raise money in order to attend the National Alzheimer’s Forum in DC and increase critical awareness for the cause overall.

1888789_10100730153268974_6571049515574331560_oAbout Kristin: My name is Kristin Dahlquist and I am the Board Chair of the Central Ohio Junior Committee. Our JC is in it’s fourth year of existence, and I am in my second year as the Chair. Professionally, I am the Managing Director of the Higher Education Center for Alcohol and Drug Misuse Prevention and Recovery and am pursuing my Master’s in Public Health at The Ohio State University.


Crowdfunding is a great way to generate resources to complete a project, goal or task. I use crowdfunding each year to raise money to attend the National Alzheimer’s Forum in Washington, DC. Crowdfunding has been wildly successful in sending the Central Ohio Junior Committee members to DC – this year I am one of ten individuals from our team going to the National Forum. Beyond raising funds, it creates awareness.

Step 1: Create your “tribe.” Your tribe is made up of your supports – those individuals in your life that know what good work you’re doing for Alzheimer’s Disease, or those people who have also been personally affected. A tribe is usually made up of family, friends, community partners, coworkers and professional acquaintances. Engage your tribe throughout the year so they know and understand the effort you’re putting into ending this disease. This can be done in several ways, but the easiest would be through social media, monthly email updates and utilizing a blog platform. This communication creates trust with your tribe.

Step 2: Look up other campaigns that do the same thing. There is no need to recreate the wheel. If someone has created a template for this already and has been successful – steal it! Well, I call it R&D. Rip off and duplicate. It’s all for a good cause!

Step 3: Decide on a crowdfunding platform. There are plenty to choose from, but a few common platforms are Indigogo, Crowd Rise, GoFundMe, Kickstarter, First Giving, Donors Choose and Community Forward. Visit wiki comparison to find out what serves your need best. Some platforms support research; others are geared toward the development of a product and some simply raise funds for a cause. I used GoFundMe. Read more about crowdfunding services here.

Step 4: Tell your story on the crowdfunding website. It is important to engage your tribe by utilizing your testimony. One of the best skills to build is storytelling – especially your own. It isn’t easy, but it’ll pay off in the long run. If you can, include a video. Campaigns with videos raise 114% more on average. I did not use a video, but had several pictures highlighting my trip last year, including influential experiences and photos of our successes with legislators! In addition to a video, I suggest incentivizing your backers. Often times people create “tiers” of giving and with each tier comes a new benefit from social media recognition to providing custom t-shirts.

Step 5: Time to ask for donations! Crowdfunding works best as the last step. It is the hammer on the nail, so to speak. I received a scholarship from the Alzheimer’s Association District Forum District program, and then I donated to myself. This funding was listed in my crowdfunding, so I didn’t start at $0. This is important – people want to donate to something that they have faith will come to fruition! You can expect 25% of your funding will come from your inner circle within the first two weeks. Beyond that, you need to engage your tribe’s circles. Encourage sharing via social media and forwarding emails. I met a complete stranger via Facebook from social sharing who now donates $100/ year to the Alzheimer’s Association on my behalf. It works!

Step 6: Update your crowdfunding page with new information about the trip or project. This includes thanking your “backers”!

Step 7: Send personalized thank-yous! After you attend the National Alzheimer’s Forum in DC this year, you’ll want to go back next year, and the year after that…you’ll need support from them again! Keep the relationship alive.

Good luck and see you in DC!

KristinDC

Introducing the Junior Committee blog

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The Junior Committee board is excited to announce the launch of our blog! Through this forum, we hope to share the work we’re doing in the Columbus community, our own personal stories and other topics related to Alzheimer’s disease and mental/brain health. We plan to feature the thoughts, stories and research of guests including our very own Junior Committee members but also others who are passionate about a world without Alzheimer’s. Be sure to follow along here! We’ll also be posting as ALZ Junior Committee Columbus on medium.com. 

If you’re interested in contributing to our blog, please contact our Communications Chair -Kaitlin Watterson at kaitlin.watterson@gmail.com.

We look forward to sharing more with you soon!
– the Junior Committee board