Sponsor Spotlight: Premiere Research Institute

The founders of Premiere Research Institute have been conducting clinical research since 1983.  Premiere Research Institute has long been recognized as one of the leading clinical research institutions in the world.

Carl Sadowsky M.D., Paul Winner D.O. and Walter Martinez M.D. are dedicated to providing innovative solutions for patients with neurological disorders.  They have authored numerous articles in prestigious medical journals and have been recognized as “Best Doctors in America”.

As Principal Investigators they have over 75 years of combined clinical experience, and are on the cutting edge of new and exciting research programs.

Website: http://www.premiereresearchinstitute.com

Facebook: Premiere Research Institute

YouTube: https://www.youtube.com/user/PremiereResearchInst?feature=guide

Twitter: PalmBeachNeuro

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Millennials And Caregiving: The New Era Part 2

By: Jehan Wilson

For the past few years, some have viewed millennials as an impulsive group of individuals that choose to chase after the trills of life by themselves rather than adopting a “family first” mentality like their Baby Booming predecessors. As a result, it has been implied as common knowledge that millennials first seek pursuing their own professional goals or personal dreams before they even consider starting a family of their own. Contributor Neil Howe of Forbes Magazine took an interesting approach on this topic, expressing that “millennials are unfamiliar with a broad range of life skills. They are less likely than older generations to know how to sew, make basic home repairs, or drive manual-transmission cars.” In his article entitled Millennials struggles to pass Life Skills 101”, Howe is critiquing the millennial’s ability to develop basic life skills because of their dependence to develop academic skills. Although, I believe it is safe to suggest that life skills can range from knowing how to simply sew or do care repairs to cook, clean, and care for family or friends that may be unable to.

The Alzheimer’s Media Insider (ALZ) conducted a very unique study on Caregiving in May of this year which results showcase Millennials in a new light that may cause Howe to second guess his notice that generation Y is lacking the skills for life. For instance, findings from the Alzheimer’s Association express that 85% of Millennials said being a primary caregiver for someone has positively changed their family relationship. Specifically, when it comes to caregivers committing to value and care for individuals suffering from Alzheimer’s disease, Millennials are 35% more likely to feel this way than the average caregiver, 37% more likely than Generation Xers, and 64% more likely than Baby Boomers.  In addition, the findings during this ALZ study expressed that 47% of caregivers expressed developing a stronger relationship with the individual under their care”.

The experience of caring for an individual with Alzheimer’s disease is so rewarding for the millennial because the moments shared with that other person are one’s that only the millennial will remember. The value of these fleeting moments between an Alzheimer patient and their caregiver have the ability to shape a millennials future; Just take the testimony of 24 year old Brittany Williams for instance. On Blackdoctor.org, Williams shared her story of becoming the primary caregiver to her mother (who was diagnosed with early-onset Alzheimer) and her four siblings. Expressing herself as “a woefully unprepared 24 year old tasked with organizing a cross-country move, providing full-time care to my mother, and toeing the line between big sister and parent her siblings”; Williams does her best to care for her family until her mother’s passing two years later. After the passing of her mother, Williams expressed “I deeply miss my mother but I have peace because I cared for her in the way that she cared for me. Worldwide, millennials are faced with the numerous challenges of being caregivers to those with Alzheimer’s disease and others alike. But even with those differences, one thing remains constant:  What we do with our time now contributes to who we will be in the future.

** For more Stats of the ALZ study on Millennials and Caregiving, review the findings at : http://preview.alz.org/media_105280.asp#millenials

** To Read about Brittany Williams and her process of caring for her mother, check out her story at: https://blackdoctor.org/514837/my-story-alzheimers-and-a-mothers-unforgettable-love/

Millennials And Caregiving: The New Era Part 1

By: Jehan Wilson

Millennials, often times referred to “as Generation Y or the Net Generation, are the demographic cohort that directly follows Generation X,” serve as the vocal point for the Summer 201 edition of the ALZ Media Insider.

Being a caregiver is a tremulous task that many people have to encounter throughout their lifetime. When it pertains to the world of Alzheimer’s, in which, there is currently no cure available; caregiving becomes the only alternative. One aspect that has changed over the years when it relates to caregiving is the age of the caregiver. Studies show that 85 percent of millennials said that being the primary caregiver to someone with Alzheimer’s or dementia has positively changed their relations in their family.

While almost another half of millennials, approximately 47 percent believe that they developed a stronger relationship with the person they were caring for as well as gained a better understanding regarding how Alzheimer’s truly effects each individual differently.

Overall, to the millions of people suffering from Alzheimer’s across the country, caregivers serve as their “superheros” that allow them to continue their fight against Alzheimer’s until a cure is made.

 

 

 

 

Sandy’s Story: A Tribute to My Father

By Sandy Fleming

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A young Sandy with his father.

My most influential early memory of my father is of the day he gave the eulogy at his own father’s funeral. Even though I was only 10, I remember being rapt with admiration at the awesome composure and eloquence with which he delivered what must have been the most difficult address of his prolific public speaking career. That moment held particular meaning for me because it was the first time I had ever heard anyone adequately express the combination of affection and veneration for their father that I felt for him. I was listening to my hero describe his hero in a way that validated my own filial pride as his son.

My Dad is the middle of three sons born to a World War II Army Intelligence Officer turned political science professor and the Parisian hat seamstress he fell in love with while deployed during the Nazi occupation of France. He was so proud to be his parents’ son, and he worked tirelessly to live up to their example of intellectualism, patriotism, and compassionate civic duty. He somehow managed to be the smartest person in most rooms without betraying a hint of superiority or pretention. I loved to do crossword puzzles with him, but I always walked away with the sneaking suspicion that while he’d let me work out a couple of the clues so I could feel like I’d contributed, he probably could have done it faster without me.

He was fiercely passionate about his moral and political beliefs, but he never let his passion supersede his courtesy and composure. He practiced a nostalgic style of etiquette and chivalry, to the point that the only times I remember him losing his temper were when I talked back or lied to my Mom. While honesty and respect were nonnegotiable, his love for me was unconditional.

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(From right) Sandy, his mother, and his father

I never really thought of my dad as old, though I suppose in retrospect he was on the older side relative to my friends’ parents. When I left for college in 2007, he was 58 and had retired from his career as a litigator and public servant. When you’re away from someone for extended periods of time, the gradual changes in their behavior are a little easier to spot because you witness their cumulative effect all at once, instead of constant, desensitizing exposure to the slow, subtle deterioration. Every time I came home from school, the frequency of little uncharacteristic and absentminded mistakes began to steadily grow. Reluctant to inflict the devastation she expected from me, my mom waited until I had graduated in 2011 to tell me that my dad had been diagnosed with early-onset Alzheimer’s disease earlier that year. She was astonished at my lack of surprise. He was 62.

By now I’m sure you’ve realized how fortunate I feel to have been born to my parents. Trust me, I could write just as long and heartfelt a tribute to my mom, particularly in light of her heroism since my dad’s diagnosis, but for your sake I’ll save that for another piece. It is a cruel affliction to lose a parent you worship just at the age that you finally grow up enough to appreciate the titanic generosity of parenting and start to look forward to an adult relationship with them. It is something worse to watch their eyes slowly cloud with fear and confusion as their mind, their most reliable asset, begins to betray them with accelerating frequency. There is no better moniker than “The Long Goodbye.”

Since his diagnosis, one of the only comforts for my family has been the support of the Alzheimer’s Association. Not only do they raise desperately needed funds for cure seeking research, but they also provided my mom with reassuring but candid information about the realities of caretaking for loved ones with Alzheimer’s. I could always hear relief in her voice when we would talk after a meeting with their support group, a community of patients and caretakers that helped to mitigate the isolation and stigma of an early onset diagnosis.

Last fall my fiancée, Brianne, recommended that we volunteer to participate and help fundraise for The Palm Beach Walk to End Alzheimer’s. I immediately called my mom to verify her experience with the Association because I knew she would give me her candid opinion of the organization’s services. She unequivocally told me that the Alzheimer’s Association had been an invaluable resource to her, particularly during the early stages when she was seeking information about treatment, expectations for the disease’s progression, and future external care options. Her resounding endorsement sprung us into action and we began soliciting our personal and professional networks for walkers and donations.

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Sandy and Brianne at the 2016 Walk to End Alzheimer’s

At 28 years old, I should not have to refer to my living father in the past tense. Alzheimer’s disease is not reserved for elderly people who have lived full lives and had a chance to know their grandchildren or remember their son’s wedding. Today, I try to be worthy of sharing his name, my most prized possession, and I hope that I find a way to emulate his parenting when I have kids, even though I won’t get to ask him for advice. Our donations of time and money are the lifeblood of organizations like the Alzheimer’s Association who provide comfort to patients and loved ones through support and community, and fight every day to help find a cure.

Remembering Longtime Supporter and Donor, Theresa Esman

The Southeast Florida Chapter is saddened by the passing of Theresa Esman, a longtime supporter of our cause.  Since it’s inception in 2008, The Saul & Theresa Esman Foundation has donated close to $500,000 to the Alzheimer’s Association.  More recently, they funded a campaign in Miami targeting the Hispanic community to ensure that Spanish speaking members of South Florida can be aware of the services of the Alzheimer’s Association.

Executive Director Murray Levin, a personal friend of Theresa Esman’s, will continue to head the Saul and Theresa Esman Foundation and continue the legacy the Esman’s left behind.

He said, “She would want to be remembered as helping you [the Alzheimer’s Association] especially as her own younger sister is living with the disease to the point where she didn’t recognize her on the phone. The reason we went with the Alzheimer’s Association is because it is the premier organization confronting this disease.  She knew the Alzheimer’s Association is trying to slow it down and would often tell me how much she appreciated the wonderful work your organization does.”

The Southeast Florida Chapter of the Alzheimer’s Association is one of the charitable organizations supported by the foundation since its start, and it remains one of the 14 organizations currently supported by the foundation.  Grace Grant-Brown, CFO of the Southeast Florida Chapter said, “The Alzheimer’s Association has lost a very dear friend and donor. Theresa Esman, through the Saul & Theresa Esman Foundation, contributed generously to our cause in pursuit of an end to Alzheimer’s disease. Through the foundation, she has left a lasting legacy that will continue to positively impact the lives of people in our community. We at the Alzheimer’s Association, extend our condolences to Murray Levin and the team at the Saul & Theresa Esman Foundation. Mrs. Esman will be sorely missed.”

Saul and Theresa Esman moved to south Florida in 1979 and began supporting local charities, funding research to fight various diseases. Theresa Esman founded the foundation in 2008 to carry on the couple’s legacy, impacting medical research in south Florida for many years to come.

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Advocates return from the Annual Advocacy Forum inspired and ready to fight

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Last Wednesday, more than 1,300 Alzheimer’s advocates from across the country, and 21 advocates from Southeast Florida, descended on Capitol Hill in a sea of purple. This moment marked the finale to an inspiring and motivating Advocacy Forum in Washington, D.C.

The three-day event is held annually in the nation’s capital. Advocates from across the country flock to D.C. to share their stories; learn from each other; and fight for legislation to support those with Alzheimer’s and ultimately find a cure.

Doris Sanders on stage, representing Florida at the Annual Advocacy Forum.
Doris Sanders on stage, representing Florida at the Annual Advocacy Forum.

The Forum kicked off with the roll call of states in which a representative from each state provides an update on the past year’s legislative victories. Florida was proudly represented by Southeast Florida advocate, Doris Sanders, who discussed the attendance of our state advocacy day in February and the success we’ve seen securing additional funding for respite services and research funding within the state.

“It was an honor to represent Florida in the roll call and to share what we have accomplished,” said Doris Sanders. “This year’s Forum was exciting and inspirational, and as someone who has attended this event for several years, to see the growth and increased awareness was incredible.”

LGBT Alzheimer's Advocates at Annual Advocacy Forum.
Southeast Florida advocates Gordon Broom and Larry Jordan presenting at the Annual Advocacy Forum.

The next day, advocates heard from caregivers, individuals living with Alzheimer’s and Alzheimer’s champions about the need to continue the fight. Our advocates Gordon Broom and Larry Jordan took the stage Tuesday morning to share their story.

Gordon was diagnosed with early onset Alzheimer’s in 2007 and, as he said in his remarks, “he would not suffer in silence”. He has been an outspoken advocate ever since. Gordon and Larry also spoke of the outreach they have been able to do in the LGBT community. Their remarks and devotion to each other drew a standing ovation from the crowd. Many caregivers came up to them thanking them for sharing their story, as they too were a part of the LGBT community and resonated with their journey.

Throughout the day, the advocates participated in advocacy trainings to learn more about our two legislative priorities: an additional $414 million in funding for Alzheimer’s research, and support for the Palliative Care Hospice Education and Training Act (PCHETA). The advocates were briefed on the costs of Alzheimer’s and the stark divide in the amount spent on research as compared to Alzheimer’s care (for every $100 spent by the NIH on research, Medicare/Medicaid spends $16,000 on care). For more Alzheimer’s facts and statistics, please visit the 2017 Facts and Figures.

The advocates were also educated on PCHETA. This legislation aims to increase palliative care and hospice training for health care professionals; launch a national campaign to inform patients and families about the benefits of palliative care; and enhance research on improving delivery of palliative care. There is a lot of misinformation regarding palliative care, making this legislation crucial. Nearly half of all people with Alzheimer’s are in hospice care at the time of their deaths.

One of our Southeast Florida advocates, Dr. Hilary Glazer from Memorial Hospital, was able to shed light on palliative care for the group and reinforce why this legislation is so important for those living with Alzheimer’s. As Dr. Glazer said when addressing the group, “Palliative care identifies the individual goal of the individual and family- for example, whether they wish to stay at home”.

The day ended with the National Alzheimer’s Dinner, emceed by actor and Alzheimer’s champion Peter Gallagher. Awards were given to Alzheimer’s champions such as Rep. Tom Cole (OK) and Rep. Nita Lowey (NY).

Journalist Maria Shriver speaking at the Annual Advocacy Forum.
Journalist Maria Shriver speaking at the Annual Advocacy Forum.

The highlight of the evening was when Maria Shriver was honored with a Lifetime Achievement Award for her endless advocacy and persistence in finding a cure. Maria has been outspoken advocate ever since her father was diagnosed with Alzheimer’s. As a journalist, she has turned her tenacity into a lifelong passion to find a cure. She founded the Women’s Alzheimer’s Movement after discovering Alzheimer’s disproportionately affects women. Maria left the crowd inspired and ready to take our fight to Capitol Hill the next morning.

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Advocates at day 3 of the Annual Advocacy Forum.

The final day of Forum was Hill Day. The hotel lobby was wall-to-wall purple as advocates came together to don purple sashes. Buses filled with advocates ready to make a difference. We embarked on our mission to share the cost of Alzheimer’s with our elected officials, ensure they make it a priority, and share our personal stories with them.

Advocates from throughout the state of Florida packed Sens. Nelson and Rubio’s offices. Both senators are on the Select Committee on Aging, and we discussed the reality of Alzheimer’s in Florida with them, including that Florida has the second highest incidence rate in the country.

Advocates spent all day meeting with legislators and their staff sharing their stories and helping move the needle on the progress that must be made.

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(Clockwise from top left): Advocates with Rep. Frederica Wilson; Rep. Ileana Ros-Lehtinen; Rep. Mario Diaz Balart; and Rep. Brian Mast.

It was a remarkable to see no matter where you turned in the Capitol complex, there was someone in purple.  That gives me hope that we are increasing awareness and getting closer to finding a cure.

Now, we wait to see if our Congressional delegation will support our requests.  Even though we had positive meetings, our work has just begun. We cannot get complacent; we must continue this fight, and we cannot do that without your help. If you are interested in getting involved with our advocacy efforts, please contact Jennifer Braisted, jbraisted@alz.org.

The Southeast Florida chapter had 21 advocates in attendance, ranging in age from early 20s to early 80s. Some were former caregivers, including Leslie Rivera and Doris Sanders, who are continuing the fight to end Alzheimer’s even after losing their loved ones to the disease. Several current caregivers, including Cherise Fletcher, Marta Junco Ivern and Valerie Detweiler, attended in honor of their loved ones living with the disease.

Other advocates included those living with Alzheimer’s disease. Gordon Broom, a younger-onset advocate who has been living with the disease since 2007, courageously shared his personal story and his family experience with this disease at Forum.

Finally, many advocates work in the field and see the devastation the disease causes first hand. Amy Adaniel, Cristina Rodriguez and Crystal Collier attended Forum to show their support and work for a world without Alzheimer’s.

We want to thank all of our advocates for making the journey with us to Washington, D.C. last week. We cannot make a difference in the fight against Alzheimer’s without you!

Local chapter launches Young Professionals Group to change face of Alzheimer’s disease

By Jennifer Braisted

Brittany Carel was 13 years old when her mother was diagnosed with Alzheimer’s. Now a junior at Florida Atlantic University, Carel wants to use her personal experience with the debilitating disease to help educate the community and change the face of Alzheimer’s disease.

Carel and other young advocates are the reason why the Southeast Florida Chapter of the Alzheimer’s Association are creating the Young Professionals Against Alzheimer’s group.

“ The purpose of this group is to end the stigma that Alzheimer’s is an older person’s disease,” said Jennifer Braisted, staff liaison for the group, “ We need to educate our community on this disease and help people realize that Alzheimer’s affects people of all ages.”

The Yong Professionals Against Alzheimer’s will consist of four main committees that focus on education, advocacy, fundraising and marketing.  The aim is to make sure that all young professionals are able to be fully immersed in our organization.

Invitation young professionals usableThe kick off for this group will be on Wednesday, Aug. 24 at Rythm and Vine in Fort Lauderdale. Membership is open to any young professional ages 18-40 who lives between Fort Pierce and Key West who has a passion for caring for those with Alzheimer’s and finding a cure.

“I am eager to see this group take off because at the end of the day, we are the generation that will end Alzheimer’s disease,”Braisted said.

For more information, please contact Jennifer Braisted at 561.967.0047 or jbraisted@alz.org

Local staffer gives updates from AAIC16

IMG_6875This week, more than 5,500 Alzheimer’s researchers and Alzheimer’s Association staff are in Toronto, Canada for the 2016 Alzheimer’s Association International Conference. More than 20 researchers from Southeast Florida are attending and nine are presenting. Also in attendance is one of our very own staff, Micheal Pearson who is the Vice President of Programs and Public Policy. Micheal has been sending updates from the event each day. Check them out below.

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St. Anthony Catholic School students raise more than $1,000 for Alzheimer’s

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(L to R) Amy Jones, Molly’s mom; Tom Jones, Molly’s father; Molly Jones; Corrie LeMay, Development Manager for the Boca and Broward Walks; and Mandy Cerrone, Molly’s 7th grade teacher pose at the Broward Alzheimer’s Association office.

When 7th grader Molly Jones was asked to think of a topic for an end of year service project at her school, she didn’t have to think long.

Molly’s grandmother, a former principal of her school, was diagnosed with Alzheimer’s before Molly was born. She wanted to raise money for the cause and educate her classmates on the neuro-degenerative disease. She was surprised by all the support from her peers she received. She and her classmate Christian Mote lead the service project.

“Our classmates jumped on board,” she said.

Her service project group decided to do a “purple dress” day fundraiser for Alzheimer’s. Students were allowed to dress out of uniform and wear purple for a day for $5. Molly, Christian and their classmates went around the school collecting money from those who dressed in purple and explained to the classes what Alzheimer’s disease is.

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Molly Jones and her teacher Mandy Cerrone present a check to Corrie LeMay at the Broward Alzheimer’s Association Southeast Florida office.

Molly expected the event to be successful but never expected it to raise more than $1,000. Her teacher was not surprised though.

“Molly was a great leader,” said Mandy Cerrone. “The students and I saw how passionate she was for this cause.”

The money raised will go to the Broward Walk to End Alzheimer’s. Jones and her family have been involved with the Broward Walk to End Alzheimer’s held in Hollywood for a couple years and plan to go every year. This year’s walk will be on Oct. 22 at Hollywood North Beach Park. Find out more about how you can get involved with your local walk by going to alz.org/walk. Find out more about Alzheimer’s and our programs at alz.org/seflorida or by calling our 24/7 Helpline number, 800.272.3900.

Join us at a Paint the Town Purple event

Next week, the Alzheimer’s Association Southeast Florida Chapter will host Paint the Town Purple events throughout Southeast Florida. June is Alzheimer’s and Brain Awareness Month, and these events aim to raise Alzheimer’s Awareness in our communities. Find an event near you, and join us.

Take a spin at Downtown at the Gardens

Invitation to Downtown at the Gardens on SaturdayHead to Downtown at the Gardens to ride the carousel on Saturday June 25 and raise awareness and funds for Alzheimer’s. All proceeds from the coin machine next to the carousel on that Saturday will go to the Alzheimer’s Association Southeast Florida Chapter.

 

Sailfish Fountains, Lady Abundance and the Roosevelt Bridge go purple for Alzheimer’s

Invitation to stuart lighting

Come out Mulligan’s Beach House in Stuart,  61 SW Osceola Street, for appetizers on Monday, June 27, and  then join us as we head over to see the the Sailfish Fountain, Lady Abundance and the Roosevelt Bridge turn purple for Alzheimer’s. We will be at Mulligans from 6 to 8 before walking to the lightings. RSVP to Jennifer Braisted 561-967- 0047 or jbraisted@alz.org.

Freedom Tower, Miami Tower and InterContinental Hotel go purple for Alzheimer’s

Invitation to Miami invitation

On Tuesday, June 28 the Miami Tower, Freedom Tower and the InterContinental Hotel will turn purple to raise Alzheimer’s awareness. Join us for light appetizers at Hard Rock Café Miami at Bayfront Park from 5 to 8 p.m. before we walk over to see the lightings. RSVP to Jennifer Braisted 561-967- 0047 or jbraisted@alz.org.

Bank of America goes purple for Alzheimer’s in Ft. Lauderdale

Invitation to Bank of America lighting

Join us at Alex and Ani, 1012 Las Olas Boulevard, on Wednesday, June 29 from 5 to 8 p.m. for light appetizers before heading over to see the Bank of America Building going purple. RSVP to Jennifer Braisted 561-967- 0047 or jbraisted@alz.org.

 

CityPlace goes Purple for Alzheimer’s in downtown West Palm Beach

Invitation to cityplace lightingJoin us at Mellow Mushroom in CityPlace, 700 S Rosemary Ave, on Thursday, June 30 from 5:30 to 8:30 p.m. for light appetizers before heading over to see the CityPlace fountains go purple. RSVP to Jennifer Braisted 561-967-0047 or jbraisted@alz.org.