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The Escondido Walk Committee Walks the Walk

Headed up by Sue Martins, the Escondido committee for the Walk to End Alzheimer’s® comes with a keen insight on what is at stake. From honoring relatives and relatives of friends, the committee is dedicated to helping raise awareness and funds to end Alzheimer’s. 

Annaliesa Potter , Mission Chair, volunteers to raise awareness and give support to the Alzheimer's community. “I do this to honor my grandma, Joan,” she says, “in the hope that a cure is found in this lifetime.”

Dave Blake, Recruitment Chair, just wanted to help make a difference when he got involved in the walk. He was thinking more in terms of philanthropy, because as far as he knew he didn’t have a personal connection to Alzheimer’s. Then he attended a family reunion earlier this summer and learned that his favorite aunt died due to brain issues related to Alzheimer’s. He says that revelation inspired him to hope that one day he could say that he was involved in the fight to cure this disease and won.

Sue Martins, the Escondido walk chair, got involved because her mother-in-law was diagnosed with Alzheimer’s in 2007 and passed in 2014. This her fourth walk.

“I started asking about volunteer opportunities with the Alzheimer's Association a few months before she passed and attended my first committee meeting two weeks after her passing,” she recalls. “It was heartbreaking watching my mother-in-law go from a kind, caring and happy person to someone who was confused and disoriented. Finding out that there is no cure and knowing how it impacted not just the person with Alzheimer's, but family and friends made me want to do something.”

Anyone who sees a photo of Sue can’t help but notice the grinning kid who is always at her side. That cheerful child is her son, Anton, who she says understands that it's important to volunteer.

“I think participating in Alzheimer's events and volunteering is just a part of life for him. He was four when he started volunteering with me so I don't think he knows a life without being involved with the Alzheimer's Association.”
Sue revels in the sense of community that comes with the walk. “Our motivators may differ,” she points out, “but we're all here for the same cause and I think that's powerful and inspirational.”

Carol Rogers, Logistics Chair, went on her first walk in 2016 at the urging of a friend who shared her mother’s story of battling Alzheimer’s. When her friend asked her to join her team, she said yes to support her friend but didn’t quite expect what she found. “It’s a welcoming organization whose goal was not only to raise funds to find a cure but to build a supportive community.” And that suited Carol well.

Kamilla Shea is the Retention Chair. She currently works at Casa Aldea Senior Living, near the communities of Santaluz and Rancho Santa Fe.

 

 

Meet the 2017 San Diego Walk to End Alzheimer’s Chair

Kristen Cusato is a familiar face in San Diego. A longtime television journalist, she was anchoring the morning weekend news at KUSI when she learned that her mother was diagnosed with Lewy Body Dementia. She quit her job, packed up her belongings, her beach bike and cat, and headed back to Connecticut to become a caregiver. Her mother, Linda, lived just four years, but it was enough to redirect Kristen’s career focus.

At first she lived with her mother until Linda was moved into assisted living. Kristen went back to work at her old television station, WTNH, all while emceeing Walks to End Alzheimer’s, doing stories about Alzheimer’s, holding fundraisers, and caring for her mother. After Linda suffered a heart attack Kristen and her brother moved her into a nursing home close to where the two siblings lived. At that point she took a job as the Regional Director of the Alzheimer’s Association in Fairfield County. For two years she educated and trained others while running their local Walk to End Alzheimer’s. Linda passed at the end of 2012, and Kristen stayed in the East.

“I continued to work for the Association, using her as motivation. I did it for her, sharing her stories and my experiences,” Cusato says.

And then the lure of San Diego began to fill her with memories of the wonderful life she had in America’s Finest City.  She contacted KUSI and in late 2013 returned to San Diego as the weekend night anchor. But even being back in the city she loved wasn’t enough. After two years she knew she needed to do something else.

“I decided to step away from news after more than 20 years and explore a career in healthcare communications. I was excited to find a job at Sanford Burnham Prebys, where Alzheimer’s and neurodegeneration is a focus.”

Though Kristen works full time at the world renown research institute, she devotes every extra moment to volunteering for the Association as the Chair of the Walk to End Alzheimer’s in San Diego. That doesn’t leave a lot of down time to play drums in her band. How does she do it? Her mother continues to inspire her.

 “My mom was my best friend and biggest supporter,” Kristen says. “She continued to teach me things throughout her illness, what to do and a lot of times, what not to do, when dealing with someone with dementia. I know she is pleased that I am taking what I learned and am trying to help others – caregivers and those with the disease – through their journeys. If I can share tips, advice or a story that might make things a little bit easier for these folks, I will do it every day for the rest of my life…until I see my Mom again. I miss her.”

 

The AAIC® as reported by Executive Director, Katie Croskrey 

I had the privilege to attend the Alzheimer's Association International Conference (AAIC) in London this past week.  More than 5,500 scientists from all over the world came together to talk about their findings and thoughts about how to treat, prevent, delay and hope for a cure for Alzheimer's disease and other dementias.  I am not a scientist, but I took a lot of biology courses in college. Even so, much of what was presented was over my head, but I knew enough to listen for the big ideas.  What did I come home with?  A renewed hope that there is an answer out there for people living with dementia and for those caring for someone with dementia.  That in the meantime, it may be possible to impact the disease by getting more sleep, eating right, exercising and keeping the brain active.  And maybe most importantly, the best scientists, the most generous donors and thousands of up and coming young minds are all focused on Alzheimer's disease. I am confident that they can make a difference.

Here is a visual diary of four days in London at AAIC.

I would also like to invite all of you to attend our AAIC Research Update on August 9 at the Natural History Museum in Balboa Park.  Dr. Keith Fargo will wrap up all of the important elements of the work presented in London.   He will also answer our questions. An RSVP is required.  Please click here for more information. Hope to see you there.


San Diego man who walks for his wife defines a true champion

When Alford Claiborne’s wife, Rita, was diagnosed with Alzheimer’s one of his first stops was a visit to the Alzheimer’s Association. He took as many classes as were offered in 2003 and joined a support group. He lost Rita in March 2015 and misses her every day. He’s been an avid walker and supporter of the Walk to End Alzheimer’s for years, both as a way to honor his wife’s memory, but also to raise awareness about the disease. His daughter, Alyssia, frequently joins him and to date has walked with her dad in seven events.  

Alford is an extraordinary man. He spent 28 years in the U.S. Navy, as did his wife for 20 years. He settled in San Diego in 1978, part of his Navy career. And like many in the Navy who are posted to America’s Finest City, he stayed.

Alford is passionate about the Walk to End Alzheimer’s. He has earned Champion and Grand Champion status several times, including this year. When asked about his fundraising he is quick to point out that he considers himself more of a philanthropist than fundraiser. From the sparkle in his eyes, it’s easy to see the passion that drives his commitment. He still misses Rita, and participating in the walk gives him a way to honor her and do what he can to save others from the same fate. This year he plans to build a team of 40 walkers. How does he intend to assemble such a large group?

“All you do is start with a couple of people and then you ask them to recruit others,” he says. ”I let them see it as an opportunity to be part of it and part of something important. We’re trying to get the word out and heighten awareness of Alzheimer’s.”

One approach he plans to employ is reaching out to the walk program at the 4th district senior center in the Encanto area. He walks regularly with a large group there and expects to get 20-30 walkers to join his team.

“That’s what I’m shooting for,” he says.

He clearly has a cohesive strategy in place. For people starting a team for the first time he offers the following tips.

“The secret is talking to everyone you know and inviting as many people as you can. Then have them tell their friends that they are part of my team and get them to recruit their friends and family.”


Alford doesn’t stop there. He says he also uses the internet and Facebook.

“Use every avenue you can to reach out to people.”
Finally, when asked if he plans to train for the walk, he laughs. “I’m a marathon runner; I’ve done marathons in all 50 states. I don’t think I need to train for three miles,” he says with a grin.   No, probably not.

 

Calling All Volunteers

We are looking for anyone with a passion for the fight to end Alzheimer's to volunteer for our Walk to End Alzheimer's®. We have two walks that need you: September 9 at Crown Point on Mission Bay and September 23 in Kit Carson Park in Escondido. Volunteer for one or both. Here’s how you can help make these walks a huge success:

Walk Planning Committee:
Are you a party planner? Do you have lots of ideas and connections throughout the community? We're looking for planning committee members who want to help with the planning and logistics for the Walk to End Alzheimer's.

Set up/Tear down Volunteers:
You'll help put the walk together and take it down.

Registration:
Help walkers as they arrive by verifying registration, and directing participants to the start area.

Route Volunteer:
Keep our walkers hydrated by working the water station or be part of the cheer committee. You'll be staged at different points in the walk to cheer on the walkers.

Booth Activity Coordinator:
We have several Alzheimer's supported booths that need volunteers to help organize the participants, keep the booth area clean, answer questions and serve as all around general support.

Entertainment Volunteer:
Do you want to showcase your talent? Can you spin a record? Do you have mad photography skills? We're looking for Cheer Squads, Dance Squads, photographers and a DJ for our Walk events.

Sound like fun? It is! Email sandiego-walk@alz.org for more info.


Thank you for participating in The Longest Day®!

Check out our Facebook page for more pictures





San Diego breweries to toast a pint or two during The Longest Day®

Three local award-winning breweries, North Park Beer, Societe Brewing and Council Brewing, have joined together to raise funds on The Longest Day. Each will donate proceeds to the Alzheimer’s Association and each offers the public a mouthwatering way to honor The Longest Day. Given San Diego’s national reputation as a hotbed of craft breweries, locals have a chance to help wipe out Alzheimer’s while drinking a glass of locally made craft beer.

Founded in 2010, North Park Beer Company’s brewery and taproom is located in the heart of San Diego's urban 30th Street corridor. This award-winning brewery focuses on hop-forward, San Diego-style ales and lagers, but also brews a whole range of styles for those who prefer their beer less hoppy. Their taproom is family friendly offering a selection of guest beer, wine, cider, non-alcoholic beverages, and sausages from the Mastiff kitchen. Located at 3038 University Ave in San Diego. Open at 3pm on The Longest Day.

Societe Brewing Company is where the Old West meets beer. In 2012, Societe Brewing Company began production and opened their doors to a warm welcome from the craft beer community and cheers from the public. The brewery and tasting room occupy a 16,000 sq. ft. building that gives visitors a front row seat at watching the beer-making process. Their selection of beers comprises of Out West hoppy ales, Belgian-inspired Old World brews, dark Stygian beers, and wine-barrel aged feral sours handcrafted on a 20 barrel brew house. The brewery and tasting room is located at 8262 Clairemont Mesa Blvd and opens at noon.

Council Brewing Company, established in 2013 and opened in May 2014, is a small batch brewery, located in the Kearny Mesa area of San Diego. Council focuses on ales from American, Belgian, and English origins with an emphasis on San Diego's interpretation of west coast IPAs and sour beers. They chose the name "Council" because it conveys a sense of community; a place where peers come together to deliberate, debate, and make decisions. Council Brewing Company is owned and operated by Curtis and Liz Chism. It’s located at 7705 Convoy Court and opens at 2 p.m.


PS Salon & Spa On a Roll to Raise $50,000 for The Longest Day®

When an older person enters a senior living facility, often the new resident needs the gentle touch of a beauty professional to help keep them looking and feeling good. PS Salon & Spa, the proprietor of over 700 salons and spas in senior living residences in 36 states, makes sure that each of them feels pampered and beautiful by the time they leave their shop.

As a community-oriented company that believes in giving back, PS Salon & Spa plans to raise a lot of money for The Longest Day®. The company is working up to 150 teams throughout their salons and will hold 20 events nationwide, offering services such as paraffin dips for donations, cuts for the cause, bingo, bake sales and mini manicures. All services will be free and tips will go towards The Longest Day. The company’s licensed beauty professionals are 100% CARES™ Dementia and Alzheimer’s certified and well understand the needs of their clientele.

“Every day can be the Longest Day for our customers with Alzheimer’s,” says Jessica Lambert, regional manager with PS Salon & Spa. “It’s most gratifying to see what our beauty professionals do for our residents. It’s near and dear to many in our company.”

Most of the company’s salons are located in senior living residences where they have performed over three million services to date -- this includes 11 locations in southern California, including Grossmont Gardens in the San Diego area. Participating in The Longest Day appealed to PS Salon & Spa because of the deep ties their beauty professionals develop with their clients, their families and their caregivers.


My life through the lens workshop comes to the Alzheimer’s Association

On Friday mornings throughout the month May, Kevin Linde, the adult programs manager from the Museum of Photographic Arts (MOPA) in Balboa Park, taught free, two-hour, picture taking workshops to a group of a dozen people at the Alzheimer’s Association offices. On the last day the group went on a field trip to the park to practice their new skills. The older adult students, who were referred from UCSD, had either been diagnosed with mild cognitive impairment or early-stage Alzheimer’s and were accompanied by a family member or friend who also learned to look at life through a camera lens.

The first week the group learned about camera basics, what their project would cover and explored portrait photos. During the second class they photographed objects from their past, shared their importance in their lives and learned several useful tips on how to take a great shot. During the third session they explored friendships and relationships within the group, giving the students an opportunity to share thoughts. For the final class the group toured the current MOPA exhibition and was given a chance to see behind the scenes. As a final exercise they shared with one another the photo albums they produced.

All course materials, including cameras and albums, were provided.


Alzheimer’s & Brain Awareness Month kicks off in Escondido

For Alzheimer’s and Brain Awareness Month the Escondido arts community will promote the Walk to End Alzheimer’s® through a Paint the Town Purple event, June 5 – June 11. Additionally, MAGEC (Museums & Arts: Growing Escondido Culture) has urged all members to go purple during their monthly 2nd Saturday on June 10, a community event that draws residents to local arts businesses, to help support the Alzheimer’s Association and the Walk to End Alzheimer’s®.

Various businesses have agreed to participate, including the Roynon Museum of Earth Science & Paleontology, Joe’s Glass Shack, Ecovivarium, Spiritivity: a Paint & Sip Studio, Distinction Gallery, and Patio Playhouse Theater. Each participating business will receive balloons, brochures, posters, tasty treats and purple goodies to share with visitors. At 2nd Saturday visitors can experience a creative collaboration of a wide range of activities that appeal to everyone, from children to adults.

For more information on MAGEC and locations of the participating businesses please go to: VisitEscondido.com.


Coronado woman finds a special way to raise money for her Walk team

Getting diagnosed with early-onset Alzheimer’s disease at age 63 hit Azelene Allen like a slap to the face. She was devastated from the moment her doctor uttered the words. As a former nurse practitioner she knew exactly what the diagnosis meant. When she told her daughter, a nurse in Arizona, she suggested that Azelene enroll in a clinical trial. Knowing that her options were few, she agreed and eventually enrolled in a study run by Dr. Marwan Sabbagh at Barrow Neurological Institute in Phoenix. Though she doesn’t know if she is receiving the active drug or a placebo she says she feels better, adding that Dr. Sabbagh urged her to incorporate healthy habits into her lifestyle.

“I try to walk 10,000 steps every day,” Azelene says. “I got an Apple watch and it spurs me on to go out and get in those steps. I feel much better and it helps my mental ability to combat this disease.”

Not content to sit back, the wife, mother of two, and grandmother of nine, formed her first Walk to End Alzheimer’s® team last year. She dubbed it Gaga Azey, the name her grandchildren call her. Then she set out to raise money and raise she did. By the time the walk came around her team raised $3,000 and took kudos for the most funds raised by a single team in the San Diego walk. Did she hold a bake sale or ask people to pay a few cents per mile? No, she thought bigger and grander. Azelene collected items to sell at a garage sale she organized in her Coronado neighborhood. She says that under normal circumstances a garage sale might not have produced such stellar results; however when people found out that the sales would go towards the Alzheimer’s Association people paid over whatever price was marked.

“If an item was marked for $1.00, the person would pay $5.00,” she says. “That’s how we raised so much money.” The first garage sale proved so successful, she ran a second one and the same thing happened.
Will she do it again? You bet she will.

“I’ve been collecting things all year long. We’re ready to do another one,” she says. Only difference with this year’s walk is that she plans to top last year and raise even more. No doubt she will.

So how does Azelene stay upbeat and focused? “I take it a day at a time, I stay busy,” she says, adding that it’s the only way she can manage in an inexplicable world that offers her few answers. She’s hoping that the clinical trial will prove to be a panacea, yet knows that might not happen. In the meantime, she does what she can; she raises money and hopes that her efforts will help others. It’s all she can do.


Miller’s Field in Pacific Beach plans to rock it on The Longest Day®

Miller's Field Bar & Grill at 4465 Mission Blvd in Pacific Beach will be hosting a special The Longest Day® event on June 21, 7pm-10pm. Local radio D.J.s from 91X (morning show co-host Danielle) and Magic 92.5 (Xavier the X Man) will take turns at the bar pouring drinks for tips to benefit the Alzheimer's Association. Both radio personalities have a connection to the disease. Throughout the evening competitive games and beverage specials will raise added funds. What will you do on The Longest Day®? Register now.


Plant Forget-Me-Nots and support Alzheimer’s Association

Forget Me Not Days was started by Bankers Life and Casualty Company in 2003 as the company's annual fundraiser to benefit the Alzheimer's Association. Bankers Life agents and employees volunteer nationwide to collect donations and have contributed more than $4.5 million through collections and corporate donations.

This year, Forget Me Not Days are scheduled for June 2-3 to coincide with the beginning of Alzheimer's & Brain Awareness Month. Banker's Life representatives and volunteers will collect donations in exchange for a packet of Forget-Me-Not flower seeds to raise funds and awareness for Alzheimer's. One hundred percent of the donations collected benefit the Alzheimer's Association. Look for them at:

Ralph's UTC
8657 Villa La Jolla Dr,
La Jolla, CA 92037

Walmart
13487 Camino Canada
El Cajon, CA 92021

Ralph's Escondido
2417 E Valley Pkwy
Escondido, CA 92027

Vons Mission Valley
6555 Mission Gorge Rd
San Diego, CA 92120


Our chapter Open House welcomes the community to our new offices

On Thursday, May 4, the San Diego/Imperial chapter welcomed the community to our new offices at a celebratory Open House. Guests toured our new space, met the staff, picked up program information, and signed up for Walk to End Alzheimer’s® and The Longest Day®. Festivities took place in our large educational room to encourage the community to utilize the space for their own events. Guests also indulged into scrumptious appetizers and beverages.


How far will our purple shoelaces travel?

Do you have your purple shoelaces for Walk to End Alzheimer’s®? If you do and you’re going on vacation this summer be sure to take a picture of your sneaks with the shoelaces at your vacation spot. Send it to us at jitrich@alz.org, along with a description of where you took the photo, and we will post it on our social media. The person who travels the furthest will receive some cool swag. Not signed up yet? Register by May24 to get your purple shoelaces. Go to: https://alz.org/walk


Woman’s personal link to Alzheimer’s drives her passion.

Rosie Barnett knows what it’s like to care for someone with Alzheimer’s and she knows the heartache that comes with the disease, especially when it reaches the advanced stage. Fighting this disease is personal for Rosie, acutely personal. She has watched her mother decline, each day losing a small part of what made her mother who she is, who she was. Now in the advanced stage, Rosie has watched her mother change from a vibrant woman to one barely recognizable as the woman who raised her. She wouldn’t wish this disease on anyone.

“I’m passionate about working on behalf of Alzheimer’s,” she says. “No one should have to go through this. It’s miserable and not having any options for treatment makes it especially painful for patients and their families. It’s the worst kind of death sentence, you lose someone you love, one small piece at a time, until the person you knew is gone, yet still lives.”

Rosie employss out-of-the-box ideas to raise awareness and to raise funds. For example, she has a team for the Walk to End Alzheimer’s® called the Walking Winos. If you guessed that she’s a wine enthusiast you’d be right. She also runs her own photography business and she takes photos, lots and lots of photos. She recently started photographing pets, and has turned it into a project called Paws to Remember. Mostly, she takes adorable, complimentary photos of dogs. She tells their pet parents that if they wish to compensate her that they make a donation to her walk team to benefit the work of the Alzheimer’s Association.

Unconventional? Yes, but then Alzheimer’s is not a conventional disease. It defies logic; it defies years and years of research that by now should have rendered a treatment. It hasn’t and that’s why Rosie will keep doing all that she can, one step, one photo at a time.


Help our chapter win a portion of a $125,000 prize

We need your help. Our chapter is in the running with other non-profits in San Diego to win a portion of Harrah's Southern California $125,000 All-in 4 Change competition. The top 15 organizations that receive the most votes will participate in the prize. Please vote for us and encourage your friends to vote for us too. You’ll find us listed on page two. Thank you from the bottom of our purple hearts! More links to Harrah’s.


Turning the summer solstice into a day full of love

Though Beth Granby of San Diego does not have a family member with Alzheimer’s, she and her husband do have friends who have been devastated by the disease. Hearing their story made her cry.

“The hopelessness of it all made me want and even need to do something to fight Alzheimer’s,” she says.

To do that “something,” last year Beth participated in the Walk to End Alzheimer’s® at both the San Diego and Escondido locations. She raised $1,300. This year Beth is determined to do more.

She knew that the national organization for duplicate bridge, called the American Contract Bridge League (ACBL) has a partnership with the Alzheimer’s Association. She also knew that duplicate bridge clubs throughout the country raise funds from the proceeds of bridge playing on The Longest Day®.

That got Beth thinking about creating her own Longest Day activity, doing something that she liked to do. She decided that she would not limit her activity to the longest day, June 21st. Creative cap on; she approached her friends who are in Adventures in Bridge in San Diego. She started with the following poem:

There was an old lady, and bridge she did like.
She played every day and even at night.
Then one day she forgot,
And bridge she knew not.
Alzheimer’s took over, and that is not right!

Then Beth asked her friends, “What can we do to right that wrong?” Not waiting for an answer she told them that she had decided on her own longest day activity – making pillows out of t-shirts. She showed them a sample and encouraged her friends to clean out their closets and donate t-shirts with sayings and photos that would fit on a pillow. She told them that after she made the pillows she would sell them, adding that she would try to sell them back to the people who donated the t-shirts. Bold, and it worked. Her friends began giving her t-shirts and she got right on it, becoming a pillow-making machine. In the photo you can see her with some of the pillows she took back to the Adventures in Bridge group.

When asked why she’s so fervent about making the pillows and raising money for Alzheimer’s she said that surviving what could have been a fatal car accident gave her a new perspective on life. She rolled her car while driving 75 mph on the freeway. She was flung across both lanes twice and escaped unscathed, except for a few bruises. Remarkably, no one hit her.

“I don’t know why I am so lucky, but I am alive, retired, and have a skill that I enjoy. It’s time for me to give back a little, and why not use a hobby that I enjoy?”

Beth loves the idea of The Longest Day® because she gets to give back in a meaningful way and have fun doing something she loves at the same time. Doesn’t get any better than that.


Why Cara walks

At the 2016 Walk to End Alzheimer’s® Cara Shreiner raised $3,125, earning her a Grand Champions Club Member certificate that she proudly displays on her office wall. She had a personal interest in stoking the fundraising fires. Her dad, Abraham Lincoln Shreiner, Jr. is in the throes of Alzheimer’s. She thinks he’s in the moderate to early-advanced stage; she’s not sure because each day he changes, there’s no consistency day-to-day. It was tough for the family when the disease hit him early at age 62, three years ago. Cara says that despite the heartache she, her mother and her brother keep moving, because they have no other choice. The disease chose her dad, and it chose their family. Even so, they maintain a stoic attitude, because that’s what they’ve learned they have to do.

“I’ve come to terms with the fact that I’ve pretty much already lost my dad. But my mom has lost her husband, her best friend, her lover – all semblance of her life as she knew it and my heart breaks for her.” Cara says that her mom has always been strong, but Alzheimer’s has raised that strength to a new level, it has forced her into being a warrior.

Cara’s dad lives at home. Her mom retired early, but so far her retirement has been taking care of her husband full-time.
“It shouldn’t have to be that way. His retirement shouldn’t be lost in a Twilight Zone. They worked too hard for this to be their retirement.”

So Cara does what she can. She raises money through the walks, hoping that someday fathers and husbands won’t suffer from a disease that leaves them devoid of their memories and that families won’t lose their loved ones long before they die. In the meantime, the walks help her feel a sense of community. She revels in the support that she’s received from family and friends who have donated or shared loving words or walked with her. She takes heart being around people at the walks who are fighting the same fight. It gives her strength to stay focused on the dad she knew before Alzheimer’s, on the face that used to beam with love, not the now blank stares devoid of emotion or recollection. She knows that monies raised that go toward research can’t help her dad at this advanced stage; nevertheless, she is as intent as ever on helping to make Alzheimer’s a footnote in history. Cara, indeed you are a Grand Champion in every sense of the word.


Visiting the Hill, a Personal Perspective

By Katie Croskrey, Executive Director, San Diego/Imperial Chapter

My first Alzheimer's Association Advocacy Forum was a moving and inspiring experience. I met so many people who want to make a difference for their family members with Alzheimer's disease and dementia and even more inspiring were the advocates who were still fighting after losing their loved one. I met young advocates and mature advocates. People who had been caregivers and who are passionate about telling their stories to their legislators.

What surprised me next, was how welcoming the legislators were. They all had a connection and a story to tell. They wanted to do all they could to make a difference in funding research and caring for families living through this disease.

On Tuesday night we got a chance to recognize people who make a difference in their communities every day and people who use their platform to raise awareness; people like Maria Shriver and Peter Gallagher.

Advocacy day on the “Hill” was an extraordinary experience. One legislator called us "the purple people.” Indeed, that Wednesday we were a force on Capitol Hill and no matter what our individual outcomes, we had one goal. Let's END ALZ...now!

I continue to be inspired, driven and focused by the volunteers around us to not lose sight of why we are here. People with Alzheimer's disease and other dementias and their families are depending on us!

Next year I hope to have an army of volunteers from San Diego to storm the Hill. Our voices and stories are important and we need more people to represent the millions of people affected by Alzheimer's and dementia who cannot come to DC, but need their voices to be heard.


Volunteer Heather Merrill comes full circle

Serendipity was at play when Heather Merrill became an intern and Community Educator at the San Diego/Imperial Chapter. A few years ago Heather was looking for a placement to fulfill a service learning requirement for one of her college courses. Though she didn’t pursue the placement at the time due to the pending birth of her son Jackson, now 14 months, ultimately she started an internship with the chapter, utilizing her years of caregiving for her grandmother who suffered from cardiovascular disease.

Although her grandmother did not suffer from Alzheimer’s or a related dementia, Heather says that the caregiving challenges were similar, requiring unending patience, constant attention, and vigilance to her grandmother’s every need. In her grandmother’s final years she was confined to her bed and unable to tend to personal functions such as bathing and toileting.

“I saw first-hand how frustrating it was for her to lose her dignity,” Heather says. “Ever since then I’ve felt very strongly toward compassionate care.”

Heather well understands the frustrations and guilt that comes with being a primary, on-site caregiver to someone unable to care for herself. She says that she sympathizes with the gamut of emotions felt by dementia caregivers.

During her college career Heather has taken a myriad of courses in biology, cognitive psychology and developmental aging in adults. It was those courses that piqued her interest in Alzheimer’s, which has left her pondering why with all the research being conducted a treatment still eludes the Alzheimer’s community.

“I find it remarkable that we’ve come to learn so much more about the brain in recent years, but still have no cure,” she says.

Late last year, Heather learned that her husband’s great-uncle recently lost his wife to Alzheimer’s. Hearing him talk about the experience reinforced Heather’s conviction that the Alzheimer’s Association is where she was meant to be. And then she found out about an even closer connection. Her great-aunt told her that her great-grandfather, William E. Phillips, was from Chicago and was involved with the Alzheimer’s Association in its early years.

“When my great-grandmother was diagnosed with Alzheimer's, Roger Stone of the Stone Container Corp connected him to the board of the Alzheimer's Association,” Heather says.” At the time he was living in Naples, Florida, but would return to Chicago every year to attend conventions in Chicago and either attend or help with organizing the Rita Hayworth Gala. When I was born, he wrote a letter to me that over the years was lost, so I never had the chance to read it. Knowing this now and having this connection makes me feel like it's his way of reaching out. It's quite special, considering I didn't know anything about it when I chose the Alzheimer's Association to work with.”

This story and Heather’s family’s involvement with the Alzheimer’s Association comes full circle. Is this Heather’s destiny, put into motion by her great-grandfather? Perhaps. Either way, we are thrilled to have Heather as a part of our team and the Alzheimer’s Association family.


Scavenging for Alzheimer’s

Debby Golden of Ramona, CA lives in a small town, but she has big ideas. As her mom’s caregiver she wanted to do something out-of-the-ordinary for The Longest Day to honor her mom and boy did she come up with a creative idea. Debby is conducting a scavenger hunt in Ramona on Saturday, June 17th. Why a scavenger hunt? Debby loved scavenger hunts as a kid, and carried on the tradition with her own kids and grandkids. In thinking about an activity for The Longest Day she wanted to do something that would appeal to people of all ages, plus she wanted to involve her local community. Folks in Ramona love doing things in Ramona, especially for the greater good. Conducting a scavenger hunt seemed like a natural.

Once she decided what she wanted to do she put a plan into action placing announcements in local media and on a local events app. She’s reached out to local businesses and groups like a local Girl Scout troop to form teams for the “hunt”. She says that the teams will seek donations before and during the event. Meanwhile Debby has been driving around town and photographing things and places for the hunt list. One person on each team will receive a photo of an item with one team member in each photo. The team that finds the most items while also raising the most money will win a donated basket worth $500. Talk about incentive! Debby is on a mission to involve as many people as possible and it looks like she’s right on track to raise her goal of $2,000. Right now Debby’s team consists of her and Lightning, her dog, but with all her planning that number is going to grow rapidly.

Good luck, Debby, we know you’re going to rock it in Ramona!


The Alzheimer’s Association funds local UC SAN DIEGO researcher

On March 15, Executive Director Katie Croskrey, presented UC SAN DIEGO researcher Mike Castle, Ph.D. with the first installment check of his three-year, $175,000 Alzheimer’s Association International Research Grant award. Dr. Castle’s research is on “AAV Vectors for Widespread and Specific BDNF Delivery to the Cortex in AD”.

Dr. Castle studies adeno-associated viruses (AAV) vectors. When the opportunity arose to do a fellowship in the lab of well-known UC SAN DIEGO Alzheimer’s researcher, Dr. Mark Tuszynski, Dr. Castle jumped at the opportunity. The Alzheimer’s Association funding is making his fellowship financially viable and a reality. Without such funding, it’s questionable how long he could have stayed at UC SAN DIEGO under Dr. Tuszynski’s tutelage.

“Many of Mike’s colleagues have had to leave UC SAN DIEGO because they weren’t able to procure grant funding to continue their research,” Dr. Tuszynski said. “We’re fortunate that the Alzheimer’s Association is making his work at UC SAN DIEGO possible.”

Prior to coming to UC SAN DIEGO from the University of Pennsylvania, Dr. Castle worked on the development of AAV vectors for gene delivery to the brain, and had no prior experience with Alzheimer's disease.
“I wasn't focused on any specific disease at UPenn--just the biological function and development of the AAV system,” he said. “When I left UPenn I wanted to apply my experience to a specific disease, and I chose Alzheimer's (and Dr. Tuszynski’s lab) due to the enormous burden of the disease on society and the pressing need for novel treatment approaches, given the repeated failure of clinical trials. The funding from the Alzheimer’s Association and working in Dr. Tuszynski’s lab brought me into Alzheimer’s research,” he said, adding that he hopes to be able to remain in the Alzheimer's (AD) research field.

His work is uncommon and promising. It is well known that in AD, brain cells gradually lose their function and die. The disease largely affects the cortex, the outermost layer of the brain’s tissue. What is not largely known outside of the research community is the role of brain-derived neurotrophic factor (BDNF), a growth factor that prevents cortex cell death, preserving normal cell function. BDNF treatment reverses learning and memory deficits in animal models of AD. But there is a problem with BDNF; it does not cross the blood-brain barrier, which means it cannot be administered orally or by intravenous injection. Alternatively, a modified virus, the AAV vector can be used to deliver BDNF. When injected into the brain, AAV vectors transfer the BDNF gene to brain cells, modifying these cells to permanently produce BDNF.

Although AD affects most of the cortex, hundreds of individual brain injections would be required to treat the entire tissue, which is not clinically feasible. A recent discovery provided a promising solution. When researchers infused AAV vectors into the cerebrospinal fluid (CSF) of monkeys, it bathed the brain’s surface, resulting in widespread gene transfer throughout the cortex. This means that genes such as BDNF can be delivered to the entire cortex via a single, minimally-invasive spinal infusion. However, because the AAV vector is injected non-specifically into the CSF, it also transfers its genome to other brain regions, the spinal cord, and organs such as the heart and liver. This is a critical problem that may cause unwanted side effects.

“To address the problem, I developed a novel method for CSF infusion of AAV that substantially improves gene delivery to brain regions that are affected by AD,” he said.

Next up Dr. Castle will begin lab testing several AAV vectors that target only the cells of the cortex affected by AD. He will determine which vector optimally delivers BDNF to a mouse model of AD, and to test whether widespread BDNF treatment of the entire cortex will prevent cell death and loss of cognitive function.

He hopes that successful completion of this work will establish a platform for safe and widespread gene transfer to the cortex, greatly enhancing the feasibility of gene therapies for AD and that it will advance the development of BDNF as a promising neuroprotective therapy for AD.




 

Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.