Our Board of Directors

SBDSA is led by a Board elected by our members.  Our board members are all volunteers who organize all our events and programs.  If you wish to contact a board member please use their first name, an @ sign, followed by SBDSA.org.  The Board meets on the second Monday of the month.

Here is a little about our current Board of Directors:

Interim President: Karen Ford Cull

Karenkids

I have been involved in SBDSA since its inception. As a parent of a child with DS, my greatest support has come from other parents sharing knowledge and experience, which is the essence of SBDSA.  I moved from Britain to the South Bay in 2005, when my husband Nick got a chair at USC. I have three boys, Alexander is 13, Magnus (T21) is 11 and Oliver aged 6.  I studied at Oxford University (1989) and at University College London (1990) and in 1995 completed a PHD at the University of Manchester. I was a lecturer in Political Philosophy and History of Ideas. I had a great opportunity to teach in the emerging democracies in Eastern Europe with the Civic Education Project. I haven’t worked since my children were born, being happy to focus on my children. Since moving to California, I have become passionately interested in my new home; its huge diversity of people, its history and its nature life. I became an American citizen in 2016.

Secretary: Xindy Holliday

HolidayI’m a stay at home mom to Royal (T21) and Pearl. And I grew up in the South Bay. Growing up I knew that if I ever had kids I’d want to stay home. I feel so lucky and privileged to be able to live out my dream.
At 17 weeks pregnant we found out about Royal’s diagnosis via amnio. Royal was admitted to the NICU, at Kaiser Sunset for his first 25 days of life. And then three months later he would have two open heart surgeries to correct his heart defect, a complete AV Canal.
On March 21, 2012, I reached out to SBDSA and I’m so happy I did. It was nice to meet other parents of kids who had Ds and listen to them share stories of their day to day life. I love to see our groups grow with every new family that has joined.
Ever since we came home from Children’s Hospital Royal has been healthy and continues to grow, thrive and amaze us with his infinite curiosity and love of learning. Royal started preschool at Launch at the beginning of March.
Pearl was born on April 21st of 2014 and she is not the easy going baby I imagined she would be. Being a parent to a typical developing baby has been eye opening with its own challenges as well. She is however a healthy baby girl and is so loved by us all. I feel like Royal is the best gift I could have given my daughter and I look forward to watching my children grow together. Our family lives in Torrance.

Interim Treasurer: Roz Mooney

Young Adult Representative: Wesley Baer

My name is Wesley Baer and I am 22 years old. I have Down syndrome and so it was hard for me to do things like crawl, walk and speak. But I have Wesley worked hard and achieved a lot. I live with my mom and her wife Toni in Tournament Patio apartments in Torrance. I was born in Cape Town, South Africa and I was 1 years old when I came to California. My high school experience was amazing. I went to South High in Torrance. I was in both special day class and in regular classes. I did wrestling as a junior, chimes and also Jewish club. After high school I went to UCLA pathways for a year. While I was there I learned how to manage my money and take the public bus myself independently. I took 6 courses (career development, sexuality, money management, health and nutrition, academic skills and computer skills) and they were interesting. I made many new friends and my roommate Roger, was the BEST! After graduating from Pathways I went to Torrance adult transition program. At that Program, I have done landscaping and hotel courses at SCROC and socialized with my friends. After I graduate from TUSD in June 2016, I am going to I Can in Hermosa Beach. There, I hope to learn job skills and meet new friends. I have had 6 jobs everywhere- from Happy Hats and Burlington Coat factory to LAX Marriott and Santa Monica Anawalt and Lumber Nursery. For fun I like to watch wrestling, do karate (I am a brown belt) and listen to music. I like hanging out with friends and dancing. In the future I want to get married and live on my own and away from my family. I think that I can get more young adults with Down Syndrome to attend and belong to SBDSA by: planning activities, fun and games and hanging loose as well as job skills training. I have many friends in common, with Down Syndrome and with other disabilities.

Self Advocacy Representative: Eden RappEden

My name is Eden Rapp I’m 19 years old and I have Down syndrome. I enjoy making a difference in people’s lives. I was born in Orange County and was raised in Central California, but in 2008 my family moved to the South Bay area.

Ever since I was a baby my family started to create a community around me called inclusion it was a lot of fun. So I went to concerts, musicals, museums, acting classes, hip hop class, swimming, soccer and basketball and volunteered at the library. I also do sign language for praise team at church, and help my piano teacher with her show choir kids through her organization called Musical Connection through Inclusion.

Sixth through tenth grade I was home-schooled through South Bay Faith Academy. I finished high school in 2015 at the Humanities and Arts Academy of Los Angeles (in Harbor City). Now I am attending Harbor College taking a reading and writing class because I love writing and I want to become an author. Also I enjoy sign language and study it at El Camino College and church. I also attend the Center for Advanced Transition Skills (CATS). Through CATS I work at Gulf Avenue Elementary School in the cafeteria.

I would also like to grow as a Self Advocate to help people with Down syndrome learn how to continue to blossom and stand up for themselves. I went with my mom to a conference on disabilities and I learned a lot. I learned that even with different stories of people’s lives you can make a difference if you be more observant and look around beyond yourself. You have to think about what is going on around the world. Sometimes I go to Wikipedia and read about Down syndrome and sometimes about the world. It is very fascinating but also a little bit sad because there are people all over the world with disabilities who don’t know what to do or to say and it is hard for them to stand up for themselves. We need to be more independent, and do things on our own without our parents. And that is hard to do. But we can try.

Publicity Vice President: Lisa Concoff KronbeckConkoff Kronbeck

My name is Lisa, and my wife is Mandy. Our daughter, Leah Valerie, is 22 months old, and was born with Down syndrome and long-gap esophageal atresia. Mandy is a community college English professor, and I am Leah’s own personal attendant, nurse, clown, social media director, chauffeur, and in-house counsel. We have enjoyed meeting new friends in SBDSA, and I look forward to the opportunity to broaden awareness about SBDSA and the community and support it provides to families across the South Bay.

Information Technology Vice President: Al Hassan

Social Action/Community Outreach Vice President: Maynor Tecun

Youth Activities Vice President: Kathy Troeger.

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Kathy Troeger is originally from New York, graduating from Buffalo State College with her degree in Nutrition and Food Systems management.  She packed it all up and moved to Los Angeles (as all New Yorkers dream of doing!) where she decided this was her home. She returned to school and completed her Associates in both Radiology/ultrasonography.

Running the X-ray dept. on Catalina Island, she met her husband, Steve, a paramedic captain with the Baywatch.  They had two daughters and thought their family was complete. Lo and behold, they were blessed with  a third daughter, Kirra, who was born with Down Syndrome. Currently, they have relocated to Manhattan Beach, where their little family continues to grow and flourish.

Ways and Means Vice President: Nori Dempsey

DempseysMy name is Nori Dempsey and I am a native of Southern California.  My husband and I have three children, each 16.5 months apart! The first 5 years of motherhood was a blur. As a stay at home mom, I have been enjoying the kids growing up. My oldest, Sean, is in 3rd grade and Holly and Patrick are both in 1st grade. Holly is 8 years old and took a little extra time in preschool and DK, while Patrick, is 6 years old and started Kindergarten at 5 years old.  For the most part, I feel like I have triplets!

I have been involved with SBDSA from the time we met casually at Panera Bread.  I am thankful for all the families I have met through SBDSA and the mission of our organization. I served as Youth Activities Vice President. Currently I am working on our fundraising projects, to secure the future of SBDSA as a growing organization.

Historian: Bronwyn Shields

Bronwyn

I was born and raised in Santa Monica and Venice and moved to the South Bay in 2001. I am a film industry post production professional and am member of the Editors Guild, Local 700.

I am the mother of three unique and beautiful children. Our first son, Samuel, was born and passed away in February of 2008 as an infant. Our second son, Ryder (T21) was born in January of 2009; an Irish twin to Samuel. He was diagnosed at birth and has no health complications. He is currently about to enter First grade and has been fully included in public school. He has informed me that he will work at Disneyland when he grows up. Our daughter was born in March of 2012 and is a whirlwind of precocious preschooler passionate about horses and being first in line. My husband and I met in 1996 and married in 2003. He is my bedrock and love.

I act as a first contact resource for new parents of a child with Down syndrome. Because of my personal story and family’s background in high risk pregnancy, I am able to speak comfortably with new families about the diagnosis of Trisomy 21, what it means both in medical and practical terms and how to understand the grief that is often associated with it.

My personal interest lies in disability rights, specifically inclusive education, the development of healthy family/school relationships and the fostering of lasting authentic friendships. I am excited by the wisdom of self advocates and their experiences as they directly shape and influence how I think about disability and educate the decisions I make regarding our family.

I have been involved with SBDSA since we were a group of parents meeting at a local restaurant. The families that make up the organization are my bedrock. I cannot imagine making this journey without them and their love and support.  I am honored to be able to pay that support forward by serving on the board.

Past President : Karen Ford Cull

Karenkids

I have been involved in SBDSA since its inception. As a parent of a child with DS, my greatest support has come from other parents sharing knowledge and experience, which is the essence of SBDSA.  I moved from Britain to the South Bay in 2005, when my husband Nick got a chair at USC. I have three boys, Alexander is 13, Magnus (T21) is 11 and Oliver aged 6.  I studied at Oxford University (1989) and at University College London (1990) and in 1995 completed a PHD at the University of Manchester. I was a lecturer in Political Philosophy and History of Ideas. I had a great opportunity to teach in the emerging democracies in Eastern Europe with the Civic Education Project. I haven’t worked since my children were born, being happy to focus on my children. Since moving to California, I have become passionately interested in my new home; its huge diversity of people, its history and its nature life. I became an American citizen in 2016.

Open positions:

President, Treasurer, Executive Vice President, Activities VP, Membership V

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