100 Women Can Make a Difference: Cystic Fibrosis Fundraiser

Guests greeting one another as they arrived

On January 12th I was cordially invited to attend an event called “100 Women Can Make a Difference.” This was a benefit for The Cystic Fibrosis Foundation. I was supposed to attend with Tiiu Leek Jacobson since her daughter Lindsay Taub couldn’t attend — she was covering The Tasty Awards that night. Then Tiiu couldn’t attend since her sweet little dog was recuperating from surgery. So, I brought my best friend Morgan Hall with me to Barbara Fisher’s beautiful Westwood home where the event was held.

When we walked into the home most of the guests had already arrived and were enjoying fine wine and samples from the delicious spread of finger foods prepared by chef Warren Schwartz of The Westside Tavern, one of Morgan and my favorite restaurants on the Westside. As we walked around and mingled, many of the women told me how they were involved with The Cystic Fibrosis Foundation.

Sadly, for many of the women there, it was because they had lost someone close to them to this disease. Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. Most people who have it don’t live past 30 or 40 years old and that’s if they’re lucky.

Warren Schwartz preparing the appetizers

Two women I spoke with told me they had lost their sisters to CF. One woman was working on compiling a book with various stories from people who had experienced CF in one way or another. The room was filled with women that had experienced suffering and struggles with this horrible disease but were all here to fight back. There is always something special about being around a group of women. It’s very empowering. Everyone was kind and I could feel the love and support in the room. I could tell I was about to be a part of something really special.

We were all told to have a seat in the living room and before us sat a panel of seven women. I had read a little bit about each one of them, but still wasn’t quite sure what they’d have to say. All I knew what that they had all begun their own charity or organization to benefit children and adults in some way. I was eager to hear their stories.

Guests mingling

The event began with an introduction from Judy Ranan who said, “very few people who don’t have CF in their family or friends or sphere know about this disease, 30,000 children are effected and 10 million people are carriers…  Cystic Fibrosis is a devastating disease because it attacks the lungs and digestive system and 30,000 kids in the U.S. must deal with this disease every day. The CF foundation is working hard to find a cure.”

She eagerly introduced Joy Horowitz as the moderator for the night. Joy Horowitz is an award-winning journalist and author whose work has appeared in many national publications, including The New York Times, The Los Angeles Times and Time magazine. Her books include “Tessie and Pearlie: A Granddaughter’s Story” and “Parts Per Million: The Poisoning of Beverly Hills High School.”

Joy introduced the first woman from the panel, Joyce Bogart Trabulus “which rhymes with fabulous,” she added with a laugh, and has been a trustee of Children’s Hospital for decades. She has been raising money specifically for the Bogart Pediatric Cancer Research Center and have now raised $1 billion! She is a former TV producer and entertainment manager for successful musical artists such as KISS and Donna Summer.

She opened by saying, “I have been lucky enough to be involved in this wonderful thing for almost 30 years and if I can inspire people to find a wonderful thing for them to do or help someone who’s already doing something that’s why I’m here. “ Joyce spoke of how she had lost her first husband, Neil Bogart, to Lymphoma in 1981. Back then there weren’t many treatments available and most of them were experimental. She added sadly, “After 2 operations and at least 5 horrendous chemo treatments within one year he was gone. He was just 39.”

She was determined to do something about it and began The Neil Bogart Memorial Fund. She quickly raised lots of money holding fundraisers hosted by well-known celebrities like Dick Clark and Ed McMahon which funded a small chemotherapy research lab at Children’s hospital. Her goal was to save just one child’s life. “Today we have become a research program with four floors of labs and our name on the side of the building.  When we began, the doctors prepared parents for their children to die. And Survivors’ Day used to be a small table with balloons on the hospital lawn. Today thousands of children attend a Survivors Day festival on the Paramount lot. Leukemia is 85 percent curable. We have gone way past our goal of saving one child’s life. As my late husband would always say, one person can really make a difference.”

The next speaker on the panel was Alison Hurst. Alison is the executive director and founder of Safe Place for Youth (SPY). It is a wonderful organization that provides food, shelter, clothes, guidance, and most importantly, love to Los Angeles’ homeless children. One of the main areas they serve is in Venice Beach. I have walked along the Venice boardwalk and have seen these kids with their dogs hanging out and they are there every day. I never really took much interest in them. I didn’t realize that they were probably homeless. Alison mentioned that there are many misconceptions about these kids.

They are sleeping in alley ways; they are sleeping in cars; they are sleeping on friends’ floors; and there are hundreds and hundreds of them. Many of them are still in school, many of them are flying under the radar because they can’t stand up and say “I’m homeless” or they’ll get sent back to where they’re running from. None of us want to go to where they’re running from. “Every time a kid tells their story to me, it’s as shocking as the first time I ever heard it,” Alison said. “I have never met a kid yet that’s chosen to be homeless.”

She talked about what they do and how they help. “We open our doors a couple of nights a week. We are a caring connections to an adult. The only adults in their lives are people who want something from them. Maybe they want them to join a gang or sell drugs for them or prostitute for them. So we are just a normal caring connection to an adult with very little barriers.” The organization works really hard to make changes in these kids’ lives. “I believe that every little tiny incremental change is worth it,” she said, ending with telling us excitedly about a young man named AJ who she had reached out to recently. AJ was a young gay man who was doing meth and prostituting himself. Through SPY and some help from The Gay and Lesbian center, “he got his GED and he got a job today on Rodeo Drive as a receptionist in a salon on Rodeo Drive in Beverly Hills!” She closed with, “These kids are no different than my kids or your kids or your grandkids except that they have nowhere to turn to. They just need help.” Thanks to Alison and all of her volunteers at SPY, AJ and hundreds of other homeless youth are given love and support and someone to turn to for help.

Alison Hurst with a guest

Anna McDonnell was up next to talk about how, according to Joy Horowitz, she has been “changing the world $5 at a time.” Anna launched, 5 for Fairness, an online giving circle in which each member donates a minimum of $5 and when the amount reaches $5,000, they decide which organization (anywhere in the world) will get the $5000 grant. The only stipulation is they must be working to make the world more fair for girls.

A few different experiences inspired her to start the website. She talked about how when she was growing up she had four brothers and four sisters and after dinner, she and her sisters were the ones doing dishes and her brothers didn’t have to do any of the work. When she complained to her mother about how unfair it was, her mother told her, “nobody ever said life is fair.”

The name, 5 for Fairness, is a mission statement squeezed into three words. Five because you can become a member for $5. “I want everybody to be able to participate,” McDonnell says. And “fairness because this is about making the world fair for girls, which it truly is not.” She started working for an organization called The Global Fund for Women and began to discover that many organizations asking for grants were not meeting the qualifications. Which as she said, “Isn’t okay.”

She learned from them “the power of the collective…A lot of people say, it only takes one person. I actually don’t believe that’s true. I believe it takes a group of people,” Anna said. She spoke about how she started getting e-mails from the Barak Obama campaign asking for $10. She realized what a great idea it would be to have a lot of people donate a small amount of money and so began 5 for Fairness.

They recently began sponsoring a middle school girls’ mentoring program in East LA and the last grantee was to an organization called Solar Sisters where solar lights are distributed to women in Africa and they are also given a business model opportunity to sell the lights for future economic development.

Panelists from left to right: Sue Klug, Joyce Bogart Trabulus, Anna McDonnell, Nancy Abrahams, Joy Horowitz, Alison Hurst, Nancy Miller

Next Joy introduced Nancy Abrahams whom she had known for 28 years and met in Lamaze class. Nancy and Joy each told the story of Nancy’s son Charlie and how after he was given a shot for whooping cough, he began to have multiple seizures. The doctors told her, Charlie has a mixed seizure disorder called Pediatric Epilepsy and prescribed him multiple doses of drugs with dangerous side effects and even suggested an irreversible operation that would sever the two halves of the brain.

He was on these drugs but they were having no effect on his dozens of seizures each day. Then Nancy heard about a diet called The Ketogenic Diet from a doctor at John Hopkins Hospital.  Miraculously, within one week on the diet he was seizure and drug free!  The diet was developed in 1921, and was consistently documented, yet no doctors suggested it to Nancy and her family. Instead they offered dangerous medications that didn’t work. “Johns Hopkins was the only hospital to suggest this high fat, low carb diet that switches the body from burning glucose to fat for energy and you stay in ketosis. It mimics the effects of fasting.”

So Nancy and her husband began The Charlie Foundation to educate doctors all over the world about this incredible diet. They even made a short documentary film about it hosted by one of my personal idols, Meryl Streep. Their story has been featured in People Magazine, Dateline, Entertainment Tonight, USA Today and countless other publications. Using this diet as treatment for seizures was practically unheard of when Nancy and her husband started The Charlie Foundation back in 1994. Today there are over 200 Ketogenic Diet hospitals world wide. Nancy says, “Charlie is now 19 years old and eats whatever he wants,” and thousands of children are also healthy because Nancy and her family have spread awareness of this miracle diet that many children may never have heard of otherwise.

The next speaker was Nancy Miller, who had a beautiful and heartbreaking story to tell about overcoming tragedy and using it to make a difference. In August 2004 her 34 year old son Jimmy a lifeguard and surfing instructor took his life after a brief hospitalization for depression. She and her husband Jim created the Jimmy Miller Memorial Fund which most recently has begun offering ocean therapy to returning vets from Iraq and Afghanistan with PTSD. Joy quoted Nancy saying, “I believe we are healing each other and ourselves one wave at a time.”

Guests listening intently

We watched a video showing lots of footage of her handsome son happily surfing and also provided additional info about the organization. Then Nancy bravely told Jimmy’s story. She spoke about him growing up in Manhattan Beach and traveling all over the world, and a dream he had to share his passion for surfing especially with children. He was a lifeguard and surf instructor.

“The water was his life,” she said. She talked about how Jimmy knew something was wrong and how Nancy and her family tried to get him help — they were sent home from UCLA emergency room with nothing but two Zoloft pills and a suggestion to “find a therapist in the morning” because there was no history of mental illness in their family. “Unfortunately Jimmy could not find what he needed. He couldn’t find the help, and he took his life,” Nancy said. “Everyone that we knew, everyone that he knew, there was hole through our hearts and we couldn’t imagine what was going to happen to any of us, how we would go on.”

They regrouped and asked themselves, “What would Jimmy do and how can we honor his memory?” So they began the Jimmy Miller Foundation to honor his passion for surfing and teaching.  They got involved with a friend who worked at a local non-profit called Holly Grove. The executive director happened to be a woman who surfed and lived in Manhattan Beach.  Surfers who had been taught by Jimmy volunteered, surf boards were donated, and six children from Holly Grove were taught to surf and how to apply the principles of surfing to their everyday lives.

“Every child stood up that day,” she said with a big smile. Nancy knew “they had something that was going to work and was going to change people’s lives.” They have now expanded the program to reach out to returning veterans and marines. “We started three years ago, and it has now been accepted as one of the top therapeutic models of recovery at Camp Pendleton,” Nancy proudly announced.

Joy announced the next speaker, Sue Klug, the president of Super Value Southern California Division, better known as Albertsons. She is one of the first female presidents in the super market business, as Joys said, “Sue’s top priority is her family and is the proud mother of her 8th grade daughter Shelby who has Cystic Fibrosis.”

Judy Ranan, Sue Klug with guests

She smiled and started by saying, “What I really want to talk to you about is the disease and about Shelby’s journey.” As Shelby went through her first couple years, she was getting sick very often and none of her doctor’s knew quite why. After dozens of visits Sue finally found a pediatrician who said that she thought Shelby could have Cystic Fibrosis and would probably only live into her 20’s.

“What happens with the disease is you get all this mucus in your body because your body doesn’t function properly. I didn’t know before but, I guess there is as much space, as much surface in the bronchia of your lungs as there is in a whole tennis court.” She continued, “So you have all these little branches, and for healthy lungs you pass air through all those branches, but for the CF kids the little branches get clogged up and then ultimately they can no longer breathe.”

Sue then went on to proudly talk about her daughter, “Today she is 14 and in 8th grade. One of the things we said early on is that we wanted to encourage her to live a full and active life. Every year there is a presidential fitness award and she always gets the top award. A lot of kids with CF don’t exercise, but she doesn’t know that she’s not supposed to be able to do that so she does it.”

Then she talked about the process of Shelby’s daily care. Depending on her regimen she takes 25 to 30 pills a day. They try to feed her about 5,000 calories a day. At night she gets hooked up to a machine. One of the things is you don’t want is for the mucus to settle in their chest so this machine shakes her up and down to get the mucus out of the airwaves. The disease takes about three hours a day in management. “I wish you could all meet her,” Sue said. “She’s amazing. She lights up the room. She is the most optimistic little girl that you could ever want to meet.” She smiled proudly adding, “The hardest journey of my life has been my daughter because she has a disease. There is no cure. There is amazing science that is going on and we have to keep fighting to make sure we can create the funding to find the cure for Shelby.”  Her friends have been active in raising funds. They started Team Shelby USA and they have fundraisings like walks and climbs, bike rides and surfing events all in Shelby’s name. “Today they tell me she will live to be 37 years old and I can’t accept that.”

Our hostess Barbara Fisher and guest Nicole Swanson

The night ended with a short Q and A session and then we all gradually said our thank yous and good byes. As a gift we were each given a book, “Sixtyfive Roses: a Sister’s Memoir,” by Heather Summerhayes Cariou about a woman dealing with her sister being diagnosed with Cystic Fibrosis. My friend Morgan Hall said she was crying by the second chapter and I teared up reading the back cover.

Judy Ranan and a guest

So I know this is a very long article. It is the longest I have written thus far, but I feel like all of these women deserved more than an few short sentences to honor their accomplishments.

It’s true that one woman can make a difference. If one woman can make a difference, imagine what 100 women can do. I encourage all of you to visit these websites and donate or volunteer.

I’m happy to report that my guest and dear friend Morgan has been volunteering at SPY in Venice Beach for two weeks now and loves it! She even got her husband to donate a night’s worth of food from Salute, a Santa Monica restaurant he is managing.

All of these amazing women were very inspiring and it was a night I will never forget. One of my favorite quotes of the night that really resonated with me came from Sue when she was talking about how she felt when her daughter was in the hospital. She said, “I realized anything can happen any day. Every day is precious. I get up every day and I say I’m going to do something special today. I’m going to make a difference. I may not have tomorrow. I may not have my daughter tomorrow. I say every day that I’m thankful that I’m here today and I’m thankful that the people I Iove are in my life.”

Anyone can make a difference and as I saw on January 12th all of these women definitely have. Visit the following links below to learn more about these incredible organizations and how you can make a difference as well.

The Cystic Fibrosis Foundation

The Bogart Foundation

Safe Place for Youth (SPY)

5 for Fairness

Charlie Foundation to cure pediatric epilepsy

The Jimmy Miller Foundation

**All Photos Courtesy of Susan Truong

**Liesl Jackson is a writer/actress/comedian/pet sitter living in the heart of Hollywood. She loves the arts, animals, volunteering, traveling, and attempting to learn the acoustic guitar. Email her at liesljackson@yahoo.com. Follow The Pacific Punch on Twitter @ThePacificPunch.***

About Liesl Jackson:
Liesl Jackson is a writer/actress/comedian/pet sitter living in the heart of Hollywood. She loves the arts, animals, volunteering, traveling, and attempting to learn the acoustic guitar. Email her at liesljackson@yahoo.com. Follow her on twitter @SillyLiesl and follow The Pacific Punch @ThePacificPunch.
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320 Comments

  1. chanel 2.55 says:

    I do not even know how I ended up here, but I thought this post was great.

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