The Lili Claire Foundation

Our Family Resource Center has enlisted doctors, researchers and specialists to offer a unique blend of medical, psychosocial, counseling and advocacy services to individuals and their families.

The Lili Claire Foundation collaborates with renowned institutions such as the University of Nevada School of Medicine, UCLA, and the Meharry Medical College in Nashville to provide a dynamic vision of community educational outreach, a unique blend of medical and academic expertise, along with the foundation's holistic comprehensive wellness resources.

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Services We Provide:

For more information regarding clinic intakes, supportive services, or additional questions and concerns, please call our office at 702.862.8141.

Helping to Fill the Needs of Nevada
According to the Department of Pediatrics - Genetics at the University of Nevada School of Medicine, about 1,000 of the approximately 30,000 children born each year in Clark County have significant birth defects. Of those children in Clark County, 3% of newborns may have significant malformations, part of a chromosomal syndrome, such as Down syndrome. Another 2% are born with autism or some mental retardation, and 1% have Fetal Alcohol Syndrome. These disabling conditions account for 6% of the Clark County child and adolescence population - approximately 2,000+ children a year. Currently, the Center for Disease Control in Atlanta estimates the prevalence of autism is approximately 60/10,000.

Research
Williams syndrome is a condition that occurs in 1/10,000 births. Dr. Morris has been studying Williams syndrome since 1985, and has teamed with University of Louisville psychologist, Dr. Carolyn Mervis, since 1992. Their past research has led to the discovery of the cause of Williams syndrome (deletion of a small part of chromosome 7), a definition of the Williams Syndrome Cognitive Profile, development of a psychological test for it, discovery of a gene that contributes to the profile, and discovery of the gene involved in mental retardation in the syndrome.

The Lili Claire Foundation hosts a bi-annual Williams & Kabuki Syndrome Research Clinic, where families from all over the country come to our center. The research is funded by the National Institutes of Health.

Diagnostic Medical Genetics Clinics
Dr. Colleen Morris and her team will provide diagnostic evaluations, genetic counseling, medical advice and consultation for individuals with neurogenetic disorders. Our foundation also hosts monthly Fetal Alcohol Syndrome and Clark County School District Genetics Clinics.

Diagnostic Behavioral & Autism Clinics
This multi-disciplinary clinic with Dr. Johanna Fricke and Dr. Julie Beasley focuses on behavioral/developmental, educational and social skills difficulties experienced by children with underlying neuro-developmental medical conditions. They provide assessment and recommendations for medical, psychological, and educational interventions. (Unfortunately, medical management is not available through this clinic at this time, nor is it a screening clinic for typically functioning children with ADHD, learning disabilities or primary mental illness.)

Advocacy Services/Social Work
The center facilitates parent and professional collaboration and interagency coordination by providing support, and information concerning medical treatment, social services, educational, vocational, financial and legal rights. We also are developing workshops and seminars for the whole family, such as parent support, and socialization groups for children with disabilities.

Information Library
Our computer resource room allows families to access medical information, as well as social services in their own communities through the internet and our library.

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Meet Lili Claire's Medical Team in Las Vegas

By working with the most knowledgeable and dedicated experts in the various facets of healthcare, we are able to provide programs and services that are designed to enhance all aspects of an individuals life - medical, psychosocial, educational and vocational.

Colleen A. Morris, MD, FAAP, Professor and Chief, Genetics and Dysmorphology Section of the Department of Pediatrics, University of Nevada School of Medicine
Dr. Morris has been on The Lili Claire Foundation Medical Advisory Board for the past 6 years and is our Medical Director. Dr. Morris received her MD from Loyola University-Stritch School of Medicine, completed a pediatric residency at Phoenix Hospital's Affiliated Programs and a Clinical Genetics/ Dsymorphology fellowship at the University of Utah. Her research interest is focused on linking the genotype of Williams syndrome to the physical and behavioral phenotype, as well as studying Kabuki and Fetal Alcohol Syndrome.

Johanna S. Fricke, MD, FAAP, Behavioral Developmental Pediatrics, Associate Professor - University of Nevada School of Medicine
Dr. Fricke received her MD degree from the University Of Alabama School Of Medicine. Her first two years of residency training were in Birmingham; she completed her residency at the University of Texas Health Sciences Center in San Antonio, Texas. Dr. Fricke practiced in Reno, Nevada, for 22 years both privately and for the Nevada State Health Division. Since 1986, she has practiced developmental and behavioral pediatrics. Her interests are children with a variety of behavioral & developmental difficulties. Dr. Fricke received board certification in Developmental Behavioral Pediatrics in 2002. She is a long time child advocate in Nevada, having served on many local and state committees and organizations.

Julie Beasley, Ph.D. Child Neuro-Psychologist
Dr. Beasley is a licensed psychologist who specializes in child psychology and child neuro psychology. She has worked with infants to adolescents with developmental, learning, behavioral, and emotional disorders (e.g. ADHD, Autism, Depression, and Dyslexia through her doctoral training at Arizona State University and internship work at Children's Hospital of Orange County). Dr. Beasley's private practice includes assessment, individual and family therapy, and small group work. Dr. Beasley is known in the community for her excellent social skills groups for children who experience difficulties in these areas.

Nicole Cannon

Office Coordinator

ncannon@liliclairefoundation.org

Sobia Ahmad

Autism Coordinator

sahmad@liliclairefoundation.org

Heather Thorson

Fetal Alcohol Syndrome Coordinator

hthorson@liliclairefoundation.org

Katrina Farwig
Genetics Counselor

Tina Fontana
Genetics Counselor

Aymee Perdomo
Intake Coordinator

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Resources:

Family Pathfinder
The Vanderbilt Pathfinder site is a wealth of info.you can click on national resources for each subject matter (i.e. mental health) and it provides a lot of resources.
Nevada State Health Division
Directory of Nevada Community Pediatric Therapists
Williams Syndrome Resources:
The Williams Syndrome Association
National Institute of Neurological Disorders and Stroke
Down Syndrome Resources:
Down Syndrome
The National Down Syndrome Society
National Association for Down Syndrome
Autism Resources:
Centers for Disease Control and Prevention Autism Coalition of Nevada - ACON Flyer
Autism Society of America
First Signs
Tonyatwood
National Institute of Mental Health
Neurogenetics Online
Nevada Governor's Council On Developmental Disability

Download Forms:

For more information regarding clinic intakes, supportive services, or additional questions or concerns, please call our office at 702.862.8141.

Las Vegas Community Resource Directory

LCF Forms:
Authorization Form for Use and Disclosure of Psychotherapy Notes
Authorization for the Release of Medical Information to Lili Claire Foundation Clinic
Consent and Request to Release Information
Clark County School District Authorization for Release of Information

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Calendar:

List of upcoming Seminars or Support Groups:

"Families First - Preparing for the Future" Conference

Friday, November 16 - Saturday, November 17, 2007

at the UNLV Moyer Student Union Conference Center

Hurry, it's not too late to register!! Mark your calendars for Nevada's Conference For Families of Children and Youth with Disabilities or Special Health Care Needs, and the Professionals Who Support Them, held at UNLV. This is your chance to learn from national and local speackers (including our very own Dr. Colleen Morris and Dr. Johanna Fricke) on various topics of interest, including: early intervention, education, health care, mental health, building community, family support, and tranistion. Visit www.familiesfirstnv.org to register and for more info. Click here to view the Families First Program.

Volunteers are still needed as well - click here to fill out the Volunteer Registration Form, or contact Nicole at 702.862.8141 or Amy at 702.870.7050, if you would like to donate your time.

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On-Line Support Group Link!

This group was designed for families that are dealing with similar issues, to get to know one another (anonymously if they prefer), share triumphs, battles & resources and learn about and create upcoming parent talks/support groups/seminars.

To sign up and become a member, please go to: http://health.groups.yahoo.com/group/LiliClaire/

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Community and Corporate Support

Thank you to everyone who supported our October 2007 events!!

The Lili Claire Foundation would like to extend our gratitude to the Regal Entertainment Group for hosting the "Preview Events to Benefit Local Charities" Movie night at the Fiesta Henderson Stadium 12. On October 10th, The Lili Claire Foundation received $13,700.00 from the Channel 3 Day at the Movies sponsored by NBC KVBC and Regal Cinemas. We would also like to thank our partner Channel 3 KVBC and all the families and friends that attended.

The Lili Claire Foundation would also like to thank our sponsors, volunteers, and participants who joined us for the Fifth Annual Danny Gans Run for Children's Charities on October 20th. This year's run was the best yet and we could not have done it without the you!!

Thank you to Danny Gans, Boca Park, Las Vegas Review Journal, Southwest Airlines, The First Tee, IGT, Nevada State Bank, Finklay Toyota, PENTA, Starbucks, Par 3, Land Rover, KKLZ 96.3, KH S&S Contractors, Westgate Resorts, Friedmutter Group, NORPAC Construction, Food 4 Less, City of Las Vegas, Kids Directory, Apple Tree Wear, Viva Michoacan, Coyote Country 104.3, Mad Science, Kids Fuel, Horace Mann, Jugo Juice, Euphoria, Faulous Freddies, Applebees, LVAC, Balloons with a Twist, Regal Cinema, Wynn Resort & Casnino, Panera Bread, Saturn of W. Sahara, Dr. Michael D. Saxe, Zappos.com, Kohls, Massage by Lindsay, My Sister's Nuts, Rock n'Soul Productions, Dr. Edward Spoon, Tri-A-Run, Eagle Jet Marnell, John Grady & Associates Insurance, Lisa Mayo, Gordon Biersch, and Whole Foods. And thank you to all of our wonderful volunteers: Salinda Newman, Megan Franco, Sara Kershner, Emily Ishkanian, KC and Angie Gragson, Tiffany, Kristi and Kathy Yanke.

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Testimonials

The Kelley Family
"My husband and I have been married for 20 years when we threw in the towel on having children of our own. We prayed and talked with family and friends and decided that adoption could be the answer. Within a very short time we had been introduced to a ruff and tumble one year old, who turned two within days of being placed in our home. We were immediately head over heels in love with him. Then came the trials, struggles and very long days and nights.

He was a real challenge, we had waited for assessments and had been to see several specialist. But it was not until we found our way to the Lilli Claire Foundation that we were able to confirm that he was FAS (Fetal Alcohol Syndrome). It was such a relief to finally have a diagnoses to get our head around. We could begin to understand why his behavior was at times out of control. We could approach his education and school with a new sense of what his needs were. After we had our son for about a year God smiled on us again and a 4 1/2 month old baby girl was placed in our home. Once again she was the answer to all our prayers. This time instead of smiling once we got a second blessing and her older brother became a part of family about two months later. We are now one big happy family Dad, Mom, Son age 5, Son age 3 and a Daughter age 2. Again we saw a bunch of doctors as our middle son was considered medically fragile. We knew he was going to have some struggles and it would be a labor of love to give him every possible opportunity for success.

So imagine my surprise when I got a call from the Lille Claire Foundation that they wanted to assess my daughter. She was actually the first to be assessed. As a parent you walk the line between wanting to know everything about your child and the fear of actually knowing. The lines are so close and yet so far it seems in my mind. It was all about the know for me as a mother. I wanted to know and I had to know in able to better help my children. Even in that state of mind when the doctor said to me that she felt sure that my daughter had "Noonan's Syndrome" I was sent for a loop. I had never heard of any disorder or syndrome like that. My heart began to pound and my thoughts began to spin in my head about what her life would be like and my emotions got the best of me for a few days. Then I got my heart in check and started thinking about what we needed to do. What a relief and a blessing to find out at such an early age (2). According to the literature I have read most children don't get diagnosed until age nine and some never get a diagnoses. Yet what a blessing for us to be able to get the care and attention she and her brother will need and be able to be proactive in treatment and care for them. Any diagnoses can be overwhelming at first but knowing what it is takes some of the power out of the diagnoses and give the power to the knowledge where it belongs.

I know that I have rambled on and on but I don't know if the staff at Lilli Claire understands the impact of what they do has on families like ours. Since our assessment just a few short months ago, my children are in therapy 2-3 times a week and our home runs a little smoother as a family we have greater understanding and compassion for one another. Thank you so much for what you do, and I hope that you will be around for many decades to come. Las Vegas is so very lucky to have such a wonderful gift in your organization. We look forward to supporting you for a very long time.

With my deepest gratitude
Cheri Kelley and Family

Barbie & Danielle
The Lili Claire Foundation is a dream-come-true for families in Las Vegas who have children with neurogenetic disorders. As parents of children with Asperger's Syndrome and co-founders of the Asperger Syndrome/HFA Support Group, we know how expensive and time-consuming it is taking our children to various doctors and therapists. The Lili Claire Foundation provides everything from diagnoses to behavioral clinics at no cost to the families. How wonderful is that!!

Barbie Lauver and Danielle Wendel

Grant
To everyone at the Lili Claire Foundation,

I want to let you know how much the Lili Claire foundation means to us. The classes you hold each month have taught me skills to help my son Grant, and also provide a support group environment that comforts me because I don't have family here in Las Vegas. In addition, it really helps speaking with other parents that have the same challenges and sharing ideas to help our children.

The greatest benefits I found at Lili Claire are the resources you have to help diagnosis the different neurological disorders the children in our community face. I am s grateful that Grant had a chance to meet with Dr Beasley and Dr Fricke to be evaluated and get a true medical diagnosis for his Autism. This will be invaluable to my son's services and development as he goes through the public school system. I have to also give you many thanks, because without your leadership I believe the Lili Claire foundation would not be where it is today.

Everywhere I go I share the wonderful experiences we have had at the Lili Claire foundation and the best part is that everything you offer is free of charge.

Again, I want to thank everyone that is involved with the Lili Claire foundation and say that you are making a difference in my son's life and the community as a whole. Please feel free to use me as a reference for any parent that has questions.

Sincerely,
Lynda and Grant Tache

Vinnie
Here goes some words about Vincenzo David Caciari (Vinnie)
Vincenzo was born in Fairbanks, Alaska at Fairbanks Memorial Hospital on June 28, 1998. Vinnie was diagnosed with Williams Syndrome at 1 year old. In addition to the #7 gene deletion, mom and dad also believe that Vinnie was born without the sleep gene. Vinnie displays relentless energy at all hours of the day and night. His favorite passions include: drop kicking a ball, throwing stones in the river, pushing his lawn mower, riding his scooter, playing hockey and looking at airplane books.

Vinnie's social edge has really helped him be a great manager for the West Valley High school basketball team and also president for a select basketball team called team PASTA. His antics have inspired team PASTA to a Junior National Basketball Championship. Vinnie can be seen at games helping officials, coaches, cheerleaders, and the band.

The past three years Vinnie has attended Joy Elementary School and is in the first grade combining his intensive resource class with being mainstreamed into a regular classroom with the help of a wonderful aide. Vinnie has many people in his corner helping him be successful.

Vinnie has enjoyed flying in airplanes since he was 3 months old, and took his first trip to Montana and Colorado to see relatives. He has been to Anchorage, Juneau, Florida, North Carolina, Hawaii, Las Vegas, San Diego, and Long Beach for the Williams Syndrome Conference- alot of airmiles for a 7 year old. Vinnie always says hello to the wing when he boards a flight.

Another type of flying Vinnie likes to do is on the trampoline. After spending last summer in all the neighbors backyards he finally has a trampoline of his own. Vinnie's winter pastime is hockey. He plays it in the house and fortunately Vinnie has not broken to many things yet. Vinnie enjoys cheering for the UAF Nanooks hockey team with his headphones on to help with the noise. He loves the zamboni as it clears the ice and really enjoys Kool and the Gangs song Celebrate- One of Vinnie's favorites and he air guitars to every beat.

Vinnie's outgoing personality has opened many doors for him and put smiles on many faces. What a great gift he has. He is a blessing to friends and family.

A special thank you to the Lili Claire foundation for allowing the Caciari family to talk about Vincenzo and providing opportunity for special needs children.

Thanks
Steve Caciari

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