Proposed Conference Schedule

Here is the proposed schedule.  We had one speaker unfortunately drop out.  I have a few ideas for that last spot.  Stay tuned!!

Knott's Soak City Sibling Outing

The Sibling outing for the 2016 Annual Conference has been set.  The siblings will be going to Knott's Soak City at Knott's Berry Farm in Buena Park, California.  Several generous contributions have come into the 5p- Society, earmarked for the sibling outing, that will allows us to send the siblings without any cost or charge to the families.  The ticket will include admission and a lunch voucher.

Permission slips and waivers will be required and will be sent with the confirmation packets that will go out next month (June).

THANK YOU TO THE FURNARI AND BLAKE FAMILIES FOR THEIR GENEROSITY!!!!

Hotel Rooms are Sold Out

The Hotel Rooms at the Hilton are now sold out.  If you have made reservations but find that you cannot attend the conference, please contact Laura at (888) 970-0777 or director@fivepminus.org and let her take over your room reservation for those waiting for a room.

If you cancel your room we will lose the room from the block.

There are a lot of hotels around the area.  There are no hotels that are within walking distance that are also reasonable.  There are plenty of hotels that are in driving distance.  Here is a link from Trivago that can help you find a hotel to stay at.  The conference will still be at the Hilton.  

Thanks for your continued support and we look forward to seeing  you soon!!

2016 Conference Brochure

Download the 2016 Conference Brochure.  It includes information about the conference, Hall of Fame Nomination Form and T-shirt order form.

Questions or concerns, please contact Laura at (888) 970-0777

or director@fivepminus.org

Meet the Speakers

Meet the Speakers

Dennis Campbell, PhD

Presenting:  Cri du Chat 101 and Transition

Associate Professor of Special Education at the University of South Alabama.  Dr. Campbell is the parent of a Young adult, Amy, with 5p- Syndrome.  He chairs the Professional Advisory Board for the 5P Minus Society and has worked with many other parent support groups.  He chairs the Human rights committee which reviews, and approves rights restrictions for several of the local agencies that serve individuals with cognitive and intellectual disabilities as well as mental illness.  He has researched, published and presented extensively regarding Cri-du-Chat Syndrome, disability advocacy, and transition.  Dennis was named Parent of the Year in 2014 with his beautiful wife Shari.

AmySue Reilly, PhD

Presenting:  Transition & An Overview of ABA Therapy

Dr. AmySue Reilly is the Associate Professor of Special Education, Rehabilitation and Counseling at Auburn University, Dr. Reilly is a member of the Professional Advisory Committee for the 5P Minus Society.  She has presented at the past 11 conferences on Behavior Modification.  She has also researched and published along with Dr. Campbell regarding Cri-du-Chat Syndrome, disability advocacy and transition.  Dr. Reilly was named 2014 Super Hero of the Decade!  Because of Dr. Reilly’s continued support of the 5p- Society, the Hospitality Suite has been renamed AmySue’s Place in her honor.

Kent Nicholls

Presenting:  New Family Orientation

Like you, Kent is the parent of a child with 5p- and is always searching for information and resources to help his daughter live a better life. As the founder of the 5p- Society, Kent has participated in all 29 5p- Society Annual Conferences and has helped families and professionals connect, provide mutual support, and learn from each other. Kent currently serves on the 5p- Society Board of Directors, is chairman of the Nominating Committee and serves on other committees.  Kent was also our first and appropriately named Parent of the Year.

Kent has previously served on the Board of Directors for the March of Dimes and The ARC, as well as technology advisor to the Children’s Center for the Visually Impaired and the Bloch Cancer Survivors Park, all in Kansas City. He also recently served as a Merit Reviewer for the Patient-Centered Outcomes Research Institute in Washington DC where he evaluated grant requests for research on rare genetic conditions.

Shanida Mathieu

Presenting:  The IEP Process

Shanida Mathieu is the mother of two sons ( her eldest with Cri – du-chat syndrome). She works with families of children with disabilities, helping them advocate for appropriate educational services for their children and finding community resources to meet their children's needs. She presents parent and professional workshops on a variety of special education topics. As an education advocate for Louisiana’s federally funded parent training and information center, under the National consortium of parent training centers, Shanida has trained over 3000 parents and professionals within her state, empowering them to effectively advocate for appropriate services for students with disabilities over the last six years. Shanida has trained under some of the leading experts on special education law. 

As a dedicated education advocate for her state, she is focused on empowering parents and adult students with knowledge on their educational rights. Working as an education advocate under a federally funded program, has afforded her with the skills and knowledge to continue to empower parents and professionals to see Abilities versus DisAbilities. She has served and continues to serve on several of advisory committees, multiple task forces, advisory groups and task forces with Louisiana Department of Education, La. Children Special Health Services, La. Deaf/Blind Consortium and as a 2009 graduate of Louisiana’s Partners in Policymaking.

Douglas Sidell, MD

Presenting: ENT Manifestations of 5p-

Douglas R. Sidell is an Assistant Professor of Otolaryngology-Head and Neck Surgery Division of Pediatric Otolaryngology at Stanford University.   He currently is the Principal Investigator on several research projects including the relationship between gastroesphageal reflux and laryngomalacia in infants and the management of vocal cord dysfunction following cardiac surgery during infancy.

Dr. Sidell has worked with one of our kiddos with Cri du Chat Syndrome on repairing her laryngeal clef. These clefs are over looked by most ortholaryngolist and are sometimes misdiagnosed as paralyzed vocal cords.
 

Linda Karr O'Connor

Presenting: A Picture can Lead to a Thousand Words:  The Picture Exchange Communication System

Linda will describe and show videos of their journey with their daughter Siobhan as they found a way for Siobhan to express what she was unable to say through speaking using PECS. Linda will share with other parents what was essential in achieving Siobhan’s success.

Linda Karr O’Connor, Esq.

Linda Karr O’Connor is Director of the Scholarly Support and Research Assistant Program at the UCLA Law Library. Linda earned her B.A. at Shimer College, her J.D. at the University of San Francisco, and her Masters in Library Science at UCLA. Linda is a member of the California bar and teaches research skills to special education and disability rights attorneys. Linda is the proud parent of Siobhan Larissa Karr O’Connor, a 23 year old with Cri du Chat, whose persistent, accurate and joyful communication gets her to Ireland, Disneyland, and In-N-Out Burger. Linda was first trained in PECS in 1997 and implements PECS at home and in the community with Siobhan, using both a communication binder and a speech generating device. Linda successful advocated for and achieved proper implementation of PECS in public schools, at home, and in an adult day program.

 Rebekah Rocha

 Presenting:  Educational Options for your 5P minus child.

Educational options for your 5P minus child: This conference will discuss common public education options for Special Ed students, including Severely Handicapped programs as well as Full Inclusion. The bulk of the workshop will present a full description of full inclusion, using Gigi’s story as the main focus. Parents will learn how they can advocate for full inclusion, how to help choose appropriate goals for their child’s IEP, as well as how to “think outside the box” in terms of creating a “blended model” for their CDC child, where all Special Ed students are “included” for some part of their school day. 

Rebekah Rocha is an Elementary School Principal in Northern California, where she has worked in the education field for 17 years. She has attended hundreds of IEP meetings and is very familiar with the IEP process. In addition, she has a 7 year old daughter “Gigi” who has Cri du Chat Syndrome. Gigi started Kindergarten in a Special Day Class, but her team found that she was having more success in a Regular Education Pre-Kindergarten class. So far, Gigi has benefited from three years of full inclusion.

 Maggie Kehrer & Alice Krezymon

Presents:  Therapeutic Horseback Riding and its Benefits

 

MAGGIE KEHRER

PATH Certified Therapeutic Riding Instructor

Certified Sign Language Interpreter

Maggie has worked with persons with disabilities for over 30 years.  She worked for the Irvine School District for 25 years as a Resource Assistant at the elementary school level.   At the same time, she learned about therapeutic riding while she and her daughter were in National Charity League.  Having a love for horses and a rider while growing up, Maggie found the perfect philanthropy to work with.  She was a volunteer at the Fran Joswick Riding Center (which later became the Shea Therapeutic Riding Center) for 28 years.  She was awarded Volunteer of the Year twice and became a Volunteer Coach..  She was asked to participate in the six week intensive PATH Instructor course which was being offered at the center.  After successfully passing the course, Maggie began teaching at the Shea Center.  Maggie worked as an Instructor at Shea for eight years, teaching 34 clients a week and in charge of summer camps for 6 years.

In April 2012, Maggie started teaching at the EQUIP Therapeutic Program, hosted at the Rocking T Ranch in Yorba Linda.  Under Maggie's guidance, the Equip Program has grown with clients and volunteers.  The Equip Program ran for three years until the land was sold for new housing.

Maggie joined the Instructor team at The Back Bay Therapeutic Riding Club in January 2015.  Besides teaching lessons at the Back Bay, she also volunteers her time once a week at the Therapeutic Riding Center of Huntington Beach.

ALICE KREZYMON

PATH Certified Therapeutic Riding Instructor

French nationality

After my studies of Biology and Nutrition, and after finishing my PhD in Neurosciences in France, I moved to California and started to volunteer at the Back Bay Therapeutic Riding Club, a non-profit organization located in Newport Beach.  I was enjoying my passion of being around horses and riding them, while helping special needs children and adults. I got more and more involved in the activity of the club, and in 2014 I passed the certification from PATH (Professional Association of Therapeutic Horsemanship), and started to provide therapeutic riding lessons. Beside teaching the lessons and welcoming and training the volunteers, I train the horses and take care of them so they stay happy, safe and sound for our special needs riders.