November 7: Starting at 9 AM PST
November 8: Starting at 1 PM PST
LIVE on Zoom
PWCF’s Annual State Conference is going VIRTUAL in 2020! Join us from the comfort of your own home for this informative two-day event of LIVE presentations by leading PWS experts and professionals. Gain access to the most cutting edge PWS treatment and management strategies; network with other families and professionals during our Virtual Happy Hour; share your thoughts at our Virtual Town Hall; and more!
Attendees can download the conference recording to watch anytime.
Saturday November 7
9:00 – 9:15: Welcome and PWCF Business Meeting
9:15 – 10:00: Hypersomnia in Prader Willi Syndrome – Althea Robinson Shelton, M.D., M.P.H
10:00 – 10:15: Break (Youth and Adult Program Ages 8+)*
10:15 – 11:00: Special Education Services During a Constantly Changing Time – Roger Goatcher
11:00 – 11:20: DESTINY PWS Top Line Study Results – Jennifer L. Miller, M.D.
11:20 – 1:15: Break
1:15 – 2:00: CalABLE- Investing and Saving Plan for people with Disabilities – Dante Allen – Executive Director, CalABLE
2:00 – 2:45: Muscles for Mobility in Prader-Willi Syndrome – Derek N. Pamukoff, PhD
2:45 – 3:00: PWSA USA Updates – Paige Rivard, MBA, CEO, Prader-Willi Syndrome Association | USA
3:00 – 3:30: Social Hour
Sunday November 81:00 – 1:15: Welcome and Town Hall
1:15 – 2:00: Getting the Most out of Your Benefits – James Huyck
2:00 – 2:15: Break
2:15 – 3:00: Substantial Disability Criteria and Maintaining Regional Center Eligibility – Jenn Paige
3:00 – 3:45: Breakout sessions by age (0-3; School Age; Adulthood)
See Detailed Program Below
*People with PWS ages 8 and older are welcome to join our 1 hour Youth and Adult program provided by the UCLA Bruin Belles volunteer organization. This will require a second smart device so your child or adult can log into zoom with their email while you attend the conference. We will email you a link one day before the conference with the details to join.
Click Here to Register Today!
Registration Information
- PWCF Members: Dues Current in 2020* – NO CHARGE
- Non-Members: $25
- Ask your Regional Center to help pay for your registration! PWCF Vendor #PY1583
***Conference Special***
Renew your membership when you register for the conference and receive $10 off your 2021 PWCF Membership dues!
- Individual 2021 PWCF Membership Regularly $40 – NOW ONLY $30
- Couples, Extended Family, Family Friends 2021 PWCF Membership Regularly $55 – NOW ONLY $45
- Professionals 2021 PWCF Membership Regularly $70 – NOW ONLY $60
*Please contact the PWCF Office if you need to verify membership status. info@pwcf.org 800-400-9994
Soleno Therapeutics: https://soleno.life/
Levo Therapeutics: https://www.levotx.com/
Nexus Health Systems: https://www.nhsltd.com/
Program: November 7
9:00 – 9:15: Welcome and PWCF Business Meeting
9:15 – 10:00 – Hypersomnia in Prader Willi Syndrome – Althea Robinson Shelton, M.D., M.P.H Objectives: 1. Recognize common causes of excessive daytime sleepiness (EDS) in PWS 2. Understand the cardiovascular and cognitive effects of untreated OSA 3. Describe the difference between narcolepsy and EDS in PWS 4. Identify common treatment options for OSA and EDS in PWS
Dr. Althea Shelton is an Assistant Professor in Neurology at Vanderbilt University. She is involved in the diagnosis and treatment of pediatric sleep and epilepsy disorders and the teaching of neurology residents and fellows. Dr. Shelton earned her Medical doctorate in 2004 at Morehouse School of Medicine. She completed her Neurology residency at Emory University in Atlanta, Georgia. She completed a Clinical Neurophysiology Fellowship with an emphasis in epilepsy in 2009 and then continued further training in sleep medicine with an emphasis in pediatrics at Vanderbilt University, Nashville Tennessee in 2011. She earned a Masters of Public Health from Vanderbilt University in 2016. She is board certified in Neurology by the American Board of Psychiatry and Neurology (2008) and board certified in Sleep Medicine (2011).
10:00 – 10:15: Break
10:15 – 11:00: Special Education Services During a Constantly Changing Time – Roger Goatcher What can special education services look like during Distance Learning and Hybrid learning (part time at school-part time distance learning) models? This presentation will go over basic components that school districts are utilizing during a time when they are forced to change their instructional models. Also highlighted will be things to look for with your child and the needs that may present themselves because of Distance Learning.
I live in Northern California between Stockton and Modesto. My wife, Tracy and I have three children ages 25, 23, and 19. My first and last child have Prader-Willi Syndrome. I have worked in public education for the past 29 years as a teacher, principal, and director of Special Education. I am currently the Deputy Superintendent. Throughout my career I have had the great opportunity to work with parents, students and teachers in an effort to create programs and services for children with special needs. I am very proud of PWCF and the services they provide for our children and families.
11:00 – 11:20: DESTINY PWS Top Line Study Results – Jennifer L. Miller, M.D.
11:20 – 1:15 Break
1:15 – 2:00: CalABLE – Investing and Saving Plan for people with Disabilities – Dante Allen – Executive Director, CalABLE Learn about the California state investing and saving plan for people with disabilities including the benefits of being a CalABLE account holder, CalABLE Investment and Savings Options, and ABLE Qualified Disability Expenses
Dante Allen is the Executive Director for the California Achieving a Better Life Experience (CalABLE) Board. In this capacity, he is overseeing the development and implementation of a savings program that will enable millions of people with disabilities to save up to $100,000 without losing vital state and federal benefits.
Prior to joining CalABLE, Dante served in a leadership role with the California Department of Public Health’s Office of Health Equity (OHE). There, he served as a key advisor to the deputy director of the OHE and developed communications strategy to promote the concepts of health equity. Prior to his role with OHE, Dante served in senior communications roles for organizations large and small, including the Chevron Corporation, Kaiser Permanente, and the St. Joseph Health System. A lifelong Californian, Dante received his undergraduate degree from the University of California at Davis, and a master’s degree at The University of Southern California’s Annenberg School of Journalism and Communication.
2:00 – 2:45: Muscles for Mobility in Prader-Willi Syndrome – Derek N. Pamukoff, PhD Proper muscle function is important for achieving mobility and independence. Prader-Willi Syndrome (PWS) has known effects on muscle size, but little is known on how PWS influences how muscles work. This presentation will discuss sources of muscle weakness in PWS and its influence on everyday tasks like walking and rising from a chair. We will further provide recommendations to improve muscle function via exercise programming.
Dr. Derek Pamukoff is currently an Assistant Professor in the Department of Kinesiology at California State University, Fullerton. Originally from Canada, Dr. Pamukoff moved to the U.S. to complete a Master’s Degree in Health and Exercise Science in 2011 (Wake Forest University) and PhD in 2015 (University of North Carolina, Chapel Hill). As a scientist, Dr. Pamukoff is interested in improving mobility and muscle function by means of exercise and physical activity, and has previously collaborated with fellow board member, Dr. Daniela Rubin, on research studies in adults with Prader-Willi Syndrome. Dr. Pamukoff seeks to translate his experience into creating opportunities for all individuals to enjoy the benefits of an active and healthy lifestyle. When not in the laboratory, Dr. Pamukoff is an avid runner and former collegiate track and field athlete.
2:45 – 3:00: PWSA|USA Updates at the National Level- Paige Rivard, MBA, CEO, Prader-Willi Syndrome Association | USA
3:00 – 3:30: Social Hour
Program: November 8
1:00 – 1:15: Welcome and PWCF Town Hall
1:15 – 2:00: Getting the Most out of Your Benefits – James Huyck Overview of the various public benefits available. This would include benefits available from the Social Security Administration including Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Social Security Disability Insurance/Childhood Disability Benefits (SSDI/CDB), In Home Support Services (IHSS), and Regional Center services.
Jim has served the needs of the disabilities community for over 30 years. For the past 11 years he has assisted over 700 families and their family members with disabilities to navigate through Special Needs Trust matters and the various public benefits including SSI, SSDI, MediCal, MediCare, Regional Center, IHSS, CCS and Special Education. Jim’s experience includes being the Executive Director of Alta California Regional Center in Sacramento, Rehabilitation Counselor with the California State Department of Rehabilitation with a Regional Center caseload, and served as Associate Dean of Special Education for the San Diego Community College District. Jim earned his MBA degree from National University, a MA degree in Rehabilitation Counseling from the University of Northern Colorado, and a BA degree in Psychology from UCLA.
2:00 – 2:15: Break
2:15 – 3:00: Substantial Disability Criteria and Maintaining Regional Center Eligibility – Jenn Paige Substantial Disability criteria in three areas of living was key to your Regional Center Eligibility. Did you know it is also key to maintaining that eligibility as your child grows? Learn how Regional Center defines Substantial Disability and how to provide annual IPP updates that cover this important criteria.
I live in Orange County with my two sons, Nicholas (age 19 with PWS) and Jacob (age 17). I have enjoyed working directly with families as a Parent Mentor with the Aspiranet Pro Families Program, an Adult Day Services Coordinator with Integrated Resources Institute, and as a Service Coordinator with Regional Center of Orange County. My most recent role with Regional Center was Training and Organizational Specialist for Individual and Community Services where I gained experience with Person Centered Planning, DDS, Welfare and Institution Codes, diversity and disparity issues, and crisis management.
3:00 – 3:45: Breakout Sessions by Age (0-3; School Age; Adult)
