Tonight is the first night of Hannukah, and tomorrow is Thanksgiving. Thanksgivukkah if you will. I’m writing this note on my brand new iPad keyboard that my girlfriend so kindly gave to me for Hannukah. Man I am spoiled.
Hannukah is the “festival of lights,” which celebrates the Maccabean victory against religious oppression. Perhaps more important to the story than the military victory was the fact that the Jewish people found only enough oil to light the Temple menorah for only 1 day. The Temple menorah was supposed to be lit at all times, so this posed a great deal of stress. The miracle, however, was that there was enough oil to keep the menorah lit for 8 days. This enabled them to have adequate time to retrieve more oil to keep the menorah lit constantly.
This blog post wouldn’t be written if it didn’t have something to do with how this can relate to the Alzheimer’s advocacy movement. We are at a very important crossroad when it comes to how we as a nation (and the world) will face the problems associated with Alzheimer’s disease. Although we are making strides in trying to better understand Alzheimer’s disease and how we can better treat it, it still is a source of darkness for so many people in the world.
We, the millenial generation, the young generation, can be the light! We are all capable, no matter who we are, of making a difference in the fight to end Alzheimer’s. A question I often think of is, “How can we motivate even more young people get involved?” Influential people (movie stars, television actors, athletes, etc.) can provide that spark. Celebrity involvement is increasing with the Alzheimer’s advocacy movement, but I think having an influential person participate or personally advertise for Alzheimer’s fundraising and awareness events put on by younger people will make a big difference.
To tie this back to the theme of Hannukah, I want to make an analogy. The candle that lights the rest of the candles on the menorah is called the “Shamash.” Each candle is fully capable of being lit on its own by a match, but we use the Shamash to light the rest of the candles. If someone influential provides that little spark, there is no telling of how many people (who otherwise may not have been motivated to get involved) join in the fight to end Alzheimer’s. This isn’t a one way street, either: those very people who are motivated by celebrity involvement can provide fuel and support to those celebrities when they need an extra push or motivation to stay involved and not give up hope. Sometimes the Shamash candle goes out, and needs the other candles to shine again.
Although the government has been shut down for two weeks, Alzheimer’s advocates across the state of Virginia have been busy raising awareness and funds at the Walk To End Alzheimer’s. Three places that I have called home held Walks during this time frame: Norfolk/Virginia Beach, Richmond, and Charlottesville. I was fortunate that I was able to participate in the Walks in both Richmond and Charlottesville. These three Walks together raised $632,130.56!
Last week, I walked with many of my medical school classmates, professors, and even the VCU Women’s Basketball Team as “Rams For Memory.” We fielded the largest team at the Richmond Walk To End Alzheimer’s with 55 registered Walkers, and raised $4,475. I was honored to be invited the following week in Charlottesville to speak alongside my sister, who is the current President of Hoos For Memory at UVA. It was very nice to Walk with Hoos For Memory, who raised $4,118 as a team.
Below is the speech that Lauren and I gave to those who braved the weather in Charlottesville. I am so grateful to see how many of my friends and family have stepped up to raise Alzheimer’s awareness and funds during the Walk To End Alzheimer’s season. I hope it serves just as the beginning of their Alzheimer’s Advocacy!
Walk To End Alzheimer’s 2013
David: My name is David Goldberg, and I am a 24 year old 2nd year medical student at the VCU School of Medicine. I participated in my first Walk To End Alzheimer’s three years ago right here in Charlottesville, about a month after my grandfather passed away due to complications of Alzheimer’s disease. I decided to start a club called “Hoos For Memory,” which could serve as an Alzheimer’s awareness, fundraising, and volunteering organization for college students. There were several organizations at UVA for all types of wonderful causes, but to my surprise there was no such group for Alzheimer’s. My friends and I fielded a team about 3 weeks prior to the Walk, and managed to raise $2,710 and place among the top 10 fundraising teams. The organization grew, and in the spring we decided to hold the First Annual Munching For Memory Hot Dog Eating Contest to raise money for Alzheimer’s research right here at UVA. I wish I had started Hoos For Memory before my final year of college, but I was fortunate enough to have my sister, Lauren, come to UVA as a first year just after I graduated.
Lauren: My name is Lauren Goldberg and I am a third year Kinesiology student at UVA. When my brother began Hoos for Memory, I was a senior in high school and as a result of seeing his efforts, I was motivated to start an Alzheimer’s advocacy group at my high school. My grandfather was an amazing man and even as his disease progressed, he never lost his sense of kindness and his passion to help others. I remember one time in particular when my mother and I went to visit him at an assisted living facility and he kept asking us to let him know when we got home safely. He always put his family and the well being of others before himself. I miss my grandfather so much and having this disease take him from our family is the reason why I am so passionate about finding a cure. When I came to UVA, I joined Hoos for Memory and became president the following year. David has helped me tremendously and the club has been growing each year. I hope as years go by, that people will continue to realize that spreading awareness throughout all generations is key to fighting this disease.
David: Alzheimer’s knows no boundaries. It doesn’t matter if you’re John Doe with no education or President of the United States. All of us are affected by this disease, including our favorite athletes and entertainers. We can create a whole new method of advocacy by combining our efforts at fundraising and awareness events with the star power and influence of famous Alzheimer’s advocates. Don’t be afraid to email, tweet, or contact our “Celebrity Alzheimer’s Champions” asking for help, you never know what they will say or what their actions may do to inspire your peers to get more involved.
We would like to end with the first stanza of one of our new favorite songs, Wake Me Up by Avicii that we think applies well to the Alzheimer’s Advocacy movement, especially as a younger person:
Lauren: With the lack of treatment currently available, it does seem like we are “feeling our way through the darkness.” We are guided by our passion to end this disease so no one has to go through the pain of seeing their loved one have Alzheimer’s. We don’t know when Alzheimer’s will finally end, but we know that if we don’t start raising awareness and funds now, we will not see the cure in our lifetime.
David: People may think we are too young to understand what’s going on, or how to affect change, but if we don’t dream big, how can we achieve our goals? If we don’t open up our eyes and see how big of a problem Alzheimer’s is and how much worse it will become, we’ll wake up in 20 years wishing we had done something. That’s why we’re all here today, so this doesn’t happen. Thank you for joining us today and bringing us one step closer to ending this terrible disease.
It is not every day that I walk out of a medical school lecture truly inspired. The topic was on HIV and how far we have come in the treatment and management of the disease. We’ve all heard how “HIV is no longer a death sentence,” but actually going through the details on how much success we’ve had in treating HIV is amazing.
I remember learning about HIV in school when I was in 5th grade. I recall seeing pictures of the progression of someone who had HIV and didn’t know it. The person would get some flu-like symptoms, seem relatively healthy for a while, then one day get AIDS. Some antiretroviral therapy was around, but these drugs had several toxic side effects. People with HIV had to take multiple types of drugs at certain times throughout the day. If they didn’t take the medication correctly, then the treatment would not work. Today, the treatment regimen can be as little as one pill a day.
There have been changes in the screening protocols for HIV. I learned today that the recommendation from the CDC is to screen individuals from the ages of 13-64 without regard for perceived risk. Why did they change this from the prior method of screening only those who had perceived risk? About 1/4 of those infected with HIV in the U.S. are unaware they have the disease. According to a statistic from the CDC presented in class, “39% of people who tested positive for HIV in 2004 received a diagnosis of AIDS within one year.” With earlier detection, patients can start treatment earlier and reduce the likelihood of transmitting the disease unknowingly to other partners.
What does this have to do with World Alzheimer’s Month? I have read articles and seen in the news how the Alzheimer’s advocates of the world could take a page from the successes of the HIV advocacy movement. They are exactly right. Maria Shriver is running a special news segment on NBC called “The Age of Alzheimer’s.” We are in the age of Alzheimer’s. 5.4 million Americans have Alzheimer’s, and that number is projected to triple by 2050. There is no way to prevent, effectively treat, or cure Alzheimer’s.
We can start changing this just by raising awareness. You can walk into a room and take a poll on who has had a family member affected by Alzheimer’s, and a majority of the room will raise their hand. People are aware that Alzheimer’s exists, but may not know that Alzheimer’s is NOT a part of normal aging. People might not know that something called the Alzheimer’s Association exists to help and support them. They may not know what a Walk To End Alzheimer’s is, or that there is currently a National Alzheimer’s Plan Act. It’s time to let people know so we can have these conversations, sign up for fundraisers, and talk to our elected officials.
Early detection may be the key to figuring out a way to stop the disease. It’s important for health care providers to look for the signs of the early stages of Alzheimer’s, which can be difficult to do in a short visit. Perhaps in the future there will be a new protocol to screen people at a much younger age than the current guidelines. Some research studies are looking at entire families with a history of Alzheimer’s, and hopefully it will lead to clues on how Alzheimer’s develops.
It is now known that Alzheimer’s can develop well before the onset of the earliest symptoms. The Alzheimer’s Prevention Registry, set up by the Banner Alzheimer’s Institute, allows anyone over the age of 18 to sign up and learn about potential trials they can participate in. Those who sign up are under no obligation to participate in research, but have the option of participating in trials they may qualify for. Here is a link that goes into more detail about the Alzheimer’s Prevention Registry: http://www.nia.nih.gov/alzheimers/features/new-alzheimers-prevention-registry-recruiting-250000-volunteers
Although there is still no cure for HIV, do you think the doctors who treated the earliest cases of HIV could have imagined that taking one pill could turn a disease from a death sentence to a manageable, chronic disease? I hope to give a lecture in 20 years to a medical school class stating, “There was a time when there was no way to prevent, slow down, or cure Alzheimer’s. This is no longer the case today.”
Dear Senators and Representatives,
I wish I could be here today to speak with you in person, but I am coincidentally starting my first week of my Neurosciences course at the Medical College of Virginia/VCU School of Medicine. As you’re reading this, I’m probably pulling my hair and thinking to myself, “There is so much I have to know, how will I ever learn all of this information?!” Despite the difficulty of the course and amount of information we currently know about the brain, there is still so much we don’t know. What I’m asking for is for you to please listen to these Alzheimer’s Advocates today. If you do, in 30 years the next generation of medical students will have a syllabus three times as high as my current one because of all the new information discovered.
My first request is to please approve the BRAIN Initiative proposed by President Obama. Yes, this project will be expensive, but this will be a very sound investment. It’s amazing to see how much the Human Genome Project expanded our understanding of our genetic makeup and has opened up avenues to future treatments in medicine. The BRAIN Initiative will provide us with a much better understanding of how the brain works, and provide hope to people who Alzheimer’s, Parkinson’s, Autism, and several other diseases. As a future doctor, I want to be able to understand more about how and why these diseases happen, and what I can do to treat them. I want to be able to tell a patient that while they have Alzheimer’s, there is a beneficial treatment, not one that just helps the symptoms for a short period of time. Without this project, I fear that we are a long way away from this.
My second request is to please pass the HOPE Act. The advocates with you today will give you plenty of good information, but I want to share why this Act will be beneficial to the millions of Americans who have Alzheimer’s disease, particularly those who may not be formally diagnosed. As a first year medical student, I have the opportunity to train with a Primary Care Physician to work on my interviewing and clinical skills. As a student, I get to spend more time to sit and talk to the patient than a doctor who has to see a patient every 15 minutes. In 15 minutes, it’s very easy to miss someone with the early signs of Alzheimer’s. They may appear perfectly normal and able to cover up memory impairment. On several occasions, I have noticed that some patients seem to be confused or express their concern about memory loss. While the doctor and I can do a quick memory test to screen for obvious signs of impairment, a more thorough evaluation should be performed. This is particularly important for patients who live alone, as there may not be any family or neighbors who can constantly keep an eye on someone suffering from the early stages of Alzheimer’s. An early, formal diagnosis allows physicians to take better care of their patients, and allows patients more time to plan for the future.
I urge you to listen to the advocates today and consider passing these two important, practical pieces of legislation. The BRAIN Initiative will open a window to treatments for the numerous brain diseases that affect us, and the HOPE Act will create an easier pathway in fighting Alzheimer’s. I write this to you to honor my grandfather, who passed away from complications of Alzheimer’s in 2010. I write for my friends and family who have been affected, for my friends whose parents have Alzheimer’s, and for all those who will fight this disease in the future. We have an opportune time to take meaningful action in the fight against Alzheimer’s, and the key to that funding lies with you. Thank you for your time.
Sixteen hours of tennis? Why on earth would anyone have a sunrise-to-sunset marathon of tennis? I’m participating in “Ace It For Alzheimer’s” in honor of the caregivers of those fighting Alzheimer’s. I’m playing in honor of my family and friends who have been affected by the disease.
My grandfather passed away due to complications of Alzheimer’s in August of 2010. I remember not only the medical issues associated with the disease, but the emotional turmoil it had on my family. Being a caregiver is a full time and usually unpaid job. According to recent statistics from the Alzheimer’s Association, 15 million unpaid caregivers provided 17.4 billion hours of unpaid care in 2011.
A close family friend just lost her battle with Alzheimer’s today on May 25th. I recently visited her in the hospital, which reawakened emotions I felt when I visited my grandfather. I was fortunate that she nodded to me when I asked if she remembered me. This gave me some comfort because I knew that even for a brief moment, my family friend was aware that she was not alone.
Please join me in participating in The Longest Day. The event starts at 5:45 a.m. and will end at sunset at 8:30 p.m. on June 20th. Although I hope you can physically be at the Folkes-Stevens Tennis Center in Norfolk, you are free to play ANYWHERE at ANYTIME. You don’t even have to be in the same state to play. The only rule is that someone on the team has to be playing throughout the day. It is my hope that we’ll have enough people to play doubles for every two hour slot. Once enough players sign up, a Google document will be created to make sure all the time slots are filled throughout the day.
Many years ago my family friend gave me a tennis ball trophy with the words “World’s Greatest Tennis Player.” I may not be the world’s greatest tennis player on June 20th, but I will be the world’s most tired yet satisfied tennis player at the end of the day. I hope you’ll join me in acing Alzheimer’s off the court.
Who: Monarchs For Memory and Young Adults for Alzheimer’s Awareness (YAAA)
What: Monarchs For Memory and YAAA will be hosting a “marathon” of tennis on June 20th, 2012. This event will be an all-day tennis match from sunrise to sunset to raise money for the Alzheimer’s Association. One person from each group must be “moving” throughout the entire day. Our goal is to have enough players participate so that we can have one doubles match every two hours. If needed, we will have singles matches. This event is open to players of all different skill levels. Our team goal is to raise $1600.
When: Wednesday, June 20th. Sunrise to sunset.
Where: ODU Folkes-Stevens Indoor Tennis Center is the physical location of the event, but participants may play ANYWHERE as long as someone on the team is playing throughout the whole day.
Why: To quote the website, “The Longest Day is a sunrise-to-sunset relay event to raise funds to fuel the care, support and research efforts of the Alzheimer’s Association. Held on June 20, 2012, the longest day of the year, this event challenges participants to push their physical limits and complete approximately 16 hours of consecutive endurance activities such as biking, running or walking. It’s one day to honor the passion, dedication and strength displayed by people with Alzheimer’s and their caregivers every day.”
To sign up or make a donation: http://act.alz.org/site/TR/LongestDay/TheLongestDay?team_id=41329&pg=team&fr_id=2230
“I’ve had this disease for six years. I’m too young to be in a lot of studies, and who knows if I’ll make it to be old enough to be involved in a future Alzheimer’s study.” I sat there in disbelief as I heard a man in his mid-forties speak to me on a bus on the way to the Alzheimer’s Advocacy Forum in Washington, D.C. I would have never guessed he had Alzheimer’s. He is humorous, talkative, smart, and a great advocate for the disease. I mentioned to him that I liked his tie, which had the Alzheimer’s Association symbols on it.
That was just the beginning of my day. I arrived at the foot of the Capitol Building around 9 a.m. on April 25th, and my first meeting was with Senator Mark Warner’s office. A group of Alzheimer’s advocates from across Virginia met in his office, and spoke with Senator Warner, his Chief of Staff, and his legislative aid.
Senator Warner lost his mother to Alzheimer’s disease in 2010. He is the Co-Chair of the bipartisan Congressional Task Force on Alzheimer’s disease, and the day before our arrival, he introduced Alzheimer’s legislation to the Senate floor. The meeting went differently than I thought I would, although not necessarily in a bad way.
The meeting with Senator Warner helped me further realize the difficulty in getting federal funding for anything at this time. He was honest, and told us that until our nation gets the debt under control, increased federal funding will be very difficult to come by. It was a sobering message, but a truthful one nonetheless. This was coming from someone who understands first-hand the effects of Alzheimer’s disease. He knows how expensive it is and the associated emotional turmoil. Yet, given the political environment and the federal debt, it will be very difficult to reach a high increase in funding for Alzheimer’s.
People come to Congress all the time, sharing their experiences with various debilitating diseases. It must be extremely difficult to allocate more federal funding when hearing about all of these important diseases, particularly in the current political and economic environment. It made me realize that if we want to tackle Alzheimer’s disease, it’s going to take a lot of big changes on a national level to get the U.S. debt under of control.
Despite the environment we are in, something has to change. President Obama has initiated measures to push Alzheimer’s towards a national priority, and hopefully Congress will allocate more money to Alzheimer’s research and support in the upcoming fiscal year. This, however, will still leave Alzheimer’s severely underfunded compared to the other major diseases, despite being the only one in the top ten without a way to treat, cure, or slow the progression. The economic and social turmoil will only grow if we don’t find at least a way to slow the progression of the disease.
I sincerely hope that Congress will follow through and provide the necessary resources to implement the National Alzheimer’s Project Act (NAPA). Any extra bit of federal funding will help. In the meantime, I think it’s important to come up with ways to give incentives for researchers and drug companies to do further research. It’s time to think outside the box and think of ways to give Alzheimer’s further attention in addition to asking Congress for more funding, because who knows when Congress will be able to give adequate funding. Of course it’s important to remind Congress of the importance of Alzheimer’s, but we can’t just wait on them to magically increase it to our desired numbers. I have some ideas in mind, and I’m sure plenty of other Alzheimer’s Advocates do as well. The plan to implement NAPA can succeed if the public and private sectors truly work together.
I’ll close this post by going back to the man in his mid-forties with Younger-Onset Alzheimer’s. As he got off the bus at the end of the trip, he thanked me and reminded an Alzheimer’s Association representative to get me that tie. He didn’t forget that little detail we discussed eight hours before. That’s something worth remembering.
Munching For Memory Promotional Video. Remix should be coming soon!
Does it seem ironic that an article about Alzheimer’s talks about wanting to forget? The title is an oxymoron. As family members, we want to forget how Alzheimer’s has affected our loved one. We want to remember the good times, before the disease robbed our loved one’s memories and ability to function. We want to remember a time when the word “Alzheimer’s” meant nothing more than just another disease.
There are different ways of dealing with the loss of a loved one. There is no “right way.” Some people try to move on and not think about how their loved one passed away. Others try to raise awareness about the disease and help to raise money that may help find a cure. I took the latter path. It doesn’t mean that I’m better than anybody else. It doesn’t mean that it’s the right way to deal with loss. In fact, sometimes I wish I could just forget about Alzheimer’s entirely.
But I just can’t forget. I don’t forget the pain that I saw my mother go through as my grandfather went downhill. Anyone who’s been affected by Alzheimer’s disease knows exactly what I’m talking about. In many ways, the disease hurts the family more than the people who actually have Alzheimer’s. Eventually, the person with Alzheimer’s forgets. Their loved ones don’t.
Sometimes I wish I could forget and stop worrying about raising awareness. Like anything else, people will care more when they are personally affected. There’s only so much you can do to get people involved. I’ve reached out to celebrities who have been affected, and I’ve been fortunate enough to actually speak to some about helping out my organization’s hot dog eating contest, Munching For Memory. Although I was excited by their initial interest in helping to support the event, as it turns out, they can’t help this year. Maybe one day they can, but for the time being, they cannot.
I’ve learned that there will be disappointment when trying to promote a cause. Just because you share a common goal, it does not mean that people will help you in your specific approach. As much as I don’t want to believe it, it’s just part of life. I have my opinion on how I think awareness can be raised and how we can make a difference. I like to think that grassroots college Alzheimer’s awareness organizations can sprout up all across the United States, similar to that of Hoos For Memory in Charlottesville. I think having someone well-known to inspire college students and other young adults can help make this happen. I hope that one day it will happen.
As for myself, I have to find a balance. Of course I won’t forget about Alzheimer’s disease. I have to remember that I’m doing the best I can, and that not everything will work out the way I want. Everyone has their own way of helping. Other goals of mine will demand their share of my time. In five months, I’ll officially begin medical school and start my journey towards becoming a physician.
Whether or not I become a doctor who works with Alzheimer’s patients, I will always promote Alzheimer’s awareness because this problem is not going away. There will be some days that I wish that I could just forget Alzheimer’s, but I also know that there will come a day when we have a cure and that I’ll be glad that I remembered. I just hope that day comes sooner rather than later.