April 26 – Don’t miss out on our Early Bird Registration! Fees for Adult Attendees and Siblings over 6 years old cost only $50 each. Siblings 5 years old and under cost only $20 each. Early Bird prices end May 31st! After that, the prices increase to $75 and $40 respectively.
April 25 – Click here to check out the events and activities for families at the conference.
April 1 – Daycare is now full. If you are interested in having your name added to the waitlist, please follow the link in the registration confirmation email. If you have questions, contact us at conference@pmsf.org.
Connect, Care, Cure
Join us at the 2024 International Family Conference! We haven’t been together since 2018, and there are hundreds of new families that have joined PMSF since then. We are looking forward to a wonderful week of connection, new friends, sharing, learning, and fun for the whole family.
We will be holding our conference at the Radisson Blu at the Mall of America, in Bloomington, MN, for July 17-20, 2024. The modern hotel literally connects to the mall, with plenty to do, and lots of room for walking under air, and a free airport shuttle.There are nearby parks and trails too. Check out the links at the bottom of this email to get a look at the hotel and mall.
Scholarship for first time attendees:
Thanks to the generous support from so many Phelan-McDermid syndrome Phamilies, the people we educate about PMS at craft shows, and our annual auctions, Kyle’s Angels will be offering partial scholarships for qualifying Phamilies that have not been able to attend this conference due to financial hardship. This scholarship will cover hotel accommodations at the Radisson Blu: two nights minimum, four nights maximum (based on family needs.)
Save the Date 2024
- Date: Wed, July 17 to Sat, July 20, 2024
- Location: Radisson Blu, 2100 Killebrew Drive, Bloomington, Minnesota
- Adjacent to the Mall of America.
The Mall of America is Autism Certified.
- Click here for the Nickelodeon Sensory Guide.
2024 Agenda
The agenda will be posted as we have it available. Click here for session topics at a glance. Click here for an itemized agenda.
2024 Speakers
We are excited to have an array of expert researcher, clinician, family and industry speakers lined up. Click here to view our growing list of presenters.
Poster Sessions
Poster sessions offer a fantastic opportunity for you to interact and engage with researchers and scientists conducting research in the field of Phelan-McDermid syndrome. Click here
Family Registration is as easy as 1-2-3
- REGISTRATION: Click the “Registration” button below to register yourself and your family members. The form will guide you through the fields and will allow you to pay for the options you choose including registration, evening events, sibling field trip, family outings and tickets to Mall of America. Once completed, you will receive a confirmation email with instructions for next steps for hotel and daycare.
- HOTEL: In your confirmation email, you will receive a link and a code to make reservations at the PMSF block rate at the Radisson Blu hotel. Follow instructions from the hotel.
- DAYCARE is FULL, but there is a waitlist. In your confirmation email, you will receive a link to the waitlist through our daycare provider, Plus One. There is also an option for Saturday night evening care that still has openings.
If you have questions, please email conference@pmsf.org
Family Resources
Family Packet
The family packet includes incredible resources for preparing to join us for the 2024 Family Conference!
Find these inside and more:
- Budget planner
- Daycare information
- Session previews
- Family activities
- Kyles Angels Scholarship information
About the conference: You may find this document helpful when you are seeking assistance for travel, hotel or attendance.
US Funding Support Resource Guide: Organizations that may provide or reimburse funding for you to attend a conference
Prepare for air travel by contacting TSA Cares when you make your travel arrangements
Together
Positive Exposure
Hayden, photographed by Rick Guidotti”
Agenda & Poster Sessions
Subject to change
CONNECT
These sessions provide opportunities to meet others who live with Phelan-McDermid syndrome to share, learn from one another through a combination of expert panelists, family networking, and social meetings.
Navigating Legal Issues, Communication Enhancement, Transition Strategies for Adulthood, Adult Residential Options, Navigating Public & Private Education, Waiver Services, Caregiver Coping & Mental Health, Moms, Dads & Sibling Activities, Sibling Field Trip, Club 22 for older siblings, Sensory Room, Small group meetups.
CARE
Care sessions have a clinical focus – from diagnosis to symptom management. These sessions will be a mix of oral presentations, panel Q&A, and poster presentations including the topics listed below:
Families’ roles in research (Natural History, PMS DataHub), Medical Care, Understanding Regression, Managing Care, Exploring Therapeutic Models, Gastrointestinal Issues, Seizure Management, Neuropsychiatric Concerns, Clinical Care Guidelines, Altered Sensory Functions, Dentistry, Urology, and Lymphedema, Sleep Management
CURE
These sessions will cover the cutting edge research that informs therapeutics. CURE sessions will be a mix of oral presentations, panel Q&A, and poster presentations on the topics listed below:
Research Updates, Clinical Trials, Loss of Skills, Genetics of PMS, Advanced Research Panels, Genotype-Phenotype Correlations, Progress in Research over Two Decades, Involving Caregivers in Research
| Day | Session | Speaker |
|---|---|---|
| Wed, 7/17/24 | Registration Open at 12 noon | Patty O’Boyle |
| Wed, 7/17/24 | Phelan-McDermid Store Open | Patty O’Boyle |
| Wed, 7/17/24 | Board Meeting | Denise Croden, PMSF President |
| Wed, 7/17/24 | Mall of America Activities | Meet-up on your own |
| Wed, 7/17/24 | Family Reception | Ronni Blumenthal, PMSF CEO; Neuren Pharmaceuticals |
| THURSDAY, 7/18 | ||
| Thu, 7/18/24 | Scientific Welcome & Overview | Kate Still, PhD |
| Thu, 7/18/24 | Finding and testing new cutting edge therapies | Dr. Joseph Buxbaum, PhD (tenative) |
| Thu, 7/18/24 | Your Role in Research | Alex Kolevzon, MD, Kate Still, PhD |
| Thu, 7/18/24 | Natural History Study (background and results) & genotype-phenotype | Alex Kolevzon, MD, PhD |
| Thu, 7/18/24 | Genetic Registry (DataHub) & other clinical studies | Kate Still, PhD |
| Overview and decision-making | Elizabeth Berry-Kravis, MD, PhD | |
| Thu, 7/18/24 | Selected SAC presentations | Audrey Thurm PhD, Alex Shcheglovitov, PhD |
| Thu, 7/18/24 | Clinical trials | Elizabeth Berry-Kravis, MD, PhD |
| Thu, 7/18/24 | Current clinical trials (summaries & Q&A) | Neuren Pharmaceuticals & Jaguar Gene |
| Thu, 7/18/24 | Scientific Poster session | Various |
| Thu, 7/18/24 | Scientific Summit | Scientific Community |
| Thu, 7/18/24 | Sea Life Aquarium | Outing |
| Thu, 7/18/24 | Community Dinner | Evening Event |
| FRIDAY, JULY 19TH | ||
| Fri, 7/19/24 | Immersive Genetics 101 – Understanding types of testing, follow-up testing, terminology | Tess Levy, MSc, CGC |
| Fri, 7/19/24 | U.S. and international Clinical Consensus Guidelines | Sid Srivastava, MD, Michael Shön, MD (tentative) |
| Fri, 7/19/24 | Neuropsychiatric illness, challenging behavior, regression | Tesi Kohlenberg, MD |
| Fri, 7/19/24 | Sleep | Ann Neumeyer, MD |
| Fri, 7/19/24 | Gastrointestinal Issues – Billy Bennett | William Bennett, Jr, MD, MS |
| Fri, 7/19/24 | Epilepsy & EEG abnormalities | tba |
| Fri, 7/19/24 | Understanding Behaviors and Underlying Health Issues | Ann Neumeyer, MD |
| Fri, 7/19/24 | Lymphedema | Dana Winrow, PT-CT LANA |
| Fri, 7/19/24 | OB/Gyn | Lori Levy, MD |
| Fri, 7/19/24 | Moms group | Cathy Bottini, Andrea Papagiorgiou, Kris Graff, Jamie Vande Hey |
| Fri, 7/19/24 | Dads group | Mike Cento, Mike Riley |
| Fri, 7/19/24 | Scientific Poster session | Various |
| Fri, 7/19/24 | Nickelodeon Universe | Sibling Field Trip |
| Fri, 7/19/24 | MN Summer Camp Dance Party | Evening Event |
| SATURDAY, JULY 20 | ||
| Sat, 7/20/24 | Crayola Experience | Family Outing |
| Sat, 7/20/24 | Climb Zone | Family Outing |
| Sat, 7/20/24 | Cross-Disorder Research efforts | Audrey Thurm, PhD |
| Sat, 7/20/24 | Testing of AEF2017 (a new drug) in models of Phelan-McDermid syndrome | Catalina Betancur, PhD (tentative) |
| Sat, 7/20/24 | (TBD) Cell and organoid models to research Phelan-McDermid syndrome | Alex Shcheglovitov, PhD |
| Sat, 7/20/24 | Caregiver support groups : New family, Neuropsych, Grief, General | Kiley Richards, LISW |
| Sat, 7/20/24 | Extended family – supporting your PMS family members | Patty O’Boyle |
| Sat, 7/20/24 | Grandparent groups | Kiley Richards, LISW |
| Sat, 7/20/24 | First 100 Days” welcome session | Carla D’Imperio |
| Sat, 7/20/24 | Everyday advocacy panel | Priscila Hackstadt, Laraleigh Windom, Janet Wilson, Chrissy Hood |
| Sat, 7/20/24 | Navigating legal processes | tba |
| Sat, 7/20/24 | Mastering state systems | tba |
| Sat, 7/20/24 | Transition to adulthood (medical) | tba |
| Sat, 7/20/24 | Adult residential panel (including creative living options) | Ronni Blumenthal, Cindy Barnett, Rebecca Remberg |
| Sat, 7/20/24 | AAC Communication | Kate Ahern, Ms Ed (virtual) |
| Sat, 7/20/24 | Communications Mini Fair | Carla D’Imperio, (PRC, Dynavox, EyeGaze, PECS, sign language, high-tech, low-tech, social stories) |
| Sat, 7/20/24 | Exploring therapies Mini Fair | Carla D’Imperio, Aquatherapy, music therapy, hippotherapy, ABA, Service dogs – 4 Paws for Ability etc. |
| Sat, 7/20/24 | Nutrition and the Immune System | Chardell Buchanan, MA RDN |
| Sat, 7/20/24 | Caregiver Evening Out | On Your Own, Evening Care Available |
| PRESENTER | AFFILIATION |
|---|---|
| Antonio M. Persico, M.D., Professor in Child & Adolescent Neuropsychiatry | University of Modena and Reggio Emilia; Modena, Italy |
| Emily Payne, MS PhDc | Clemson University (Health Care Genetics PhD Program) |
| Elisa Varella Branco, MSc, PhD student | Department of Genetics, Institute of Biosciences; University of São Paulo, Brazil |
| Henrique Santos, MSc | Center for Neuroscience and Cell Biology; University of Coimbra, Portugal |
| Sara M. Sarasua, PhD, MSPH, Assistant Professor | Clemson University |
| Annemiek Landlust, Healthcare psychologist & PhD student | Autism Team Northern-Netherlands University Medical Center Groningen, the Netherlands |
| Luigi Boccuto, MD, Clinical Associate Professor, on behalf of & Bridgette A. Moffitt, Healthcare Genetics PhD. | Clemson University |
| Milena Andzelm, MD, PhD & Teresa M. Kohlenberg, MD | Boston Childrens Hospital & Harvard Medical School |
| Julia Dallman, PhD, Associate Professor | University of Miami |
| Madison Nava | Rush University Medical Center |
| Nick Frost, MD, PhD | University of Utah |
Conference Sponsors
Commitments and payment needed by June 3rd for full benefits.
Interested in sponsoring our Conference?
Commitments and payment needed by June 3rd for full benefits.
Download our Sponsor Prospectus for detailed information about sponsorship opportunities and benefits.
Contact Shira Johnson, Director of Development at shira@psmf.org with any sposorship-related questions.
When we are together, it feels like home.
We Are Phamily
View past conference Session recordings by clicking the links below
Mall of America
The Mall of America is a fantastic place for the entire family. We will have the opportunity to learn together and play together at our 2024 conference.
The Mall is an Autism Certified location. Make sure you check out the attractions and the Sensory Guide to prepare for your visit.
