Virtual Conference Center - session recordings
We experienced a fantastic array of science, medical and family sessions at the conference. We are so grateful to our presenters, sponsors and to our attendees for engaging in a whirlwind of sharing knowledge, support and engagement.
We are working with our AV vendor, Syndicast, to post the video recordings of the sessions. The sessions will be uploaded to the Virtual Conference Center and will be available to virtual and in-person registrants in the next few weeks, we expect by August 2nd.
Positive Exposure
Hayden, photographed by Rick Guidotti”
We were so fortunate to welcome Rick Guidotti, founder and director of Positive Exposure. (https://positiveexposure.org/) as our keynote speaker.
Rick spent Thursday and Friday photographing our community on the Skybridge. We cannot wait to see our community through Rick’s eyes!
Rick, formerly an international fashion photographer, now runs a not-for-profit that seeks to change society’s attitudes towards people who are different, through photography. He has a gallery space in East Harlem, NY.
We are thankful that Rick is including our Phelan-McDermid syndrome syndrome in hie extraordinary works. Rick will make his photos available to families and to PMSF in the coming weeks.
If you have questions, please email conference@pmsf.org
Connect - Care - Cure: from today to a brighter future
Our theme this year reflects the very essence of who we are as a community and a Foundation.
We haven’t been together in-person since 2018, and there are hundreds of new families that have joined PMSF since then. We look forward to welcoming families, researchers, clinicians, industry partners, and others who support people diagnosed with Phelan-McDermid syndrome to share information and support.
The Phelan-McDermid Syndrome Foundation is doing everything it takes to make today better and the future brighter for everyone living with Phelan-McDermid syndrome. You will see that the sessions of the 2024 conference are aligned with the three pillars of focus of the PMSF. Look for the colors and icons that represent CONNECT, CARE, and CURE throughout the conference. Read more below about what the focus of each pillar is and how the conference sessions are aligned with the pillar areas.
CONNECT
What we do: Support and connect families: Because each person’s experience with Phelan-McDermid syndrome is different, we walk beside families through every step of their journey, empowering them with personalized support, practical resources and positive relationships to overcome daily challenges and live their best lives.
CONNECT Conference Sessions: 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.
CARE
What we do: This pillar focusses on improveing medical care for those diagnosed with Phelan-McDermid syndrome: We educate and activate the medical community to ensure every person receives the correct diagnosis, compassionate care and coordinated treatment necessary to manage this complex condition.
CARE conference 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.
CURE
What we do: We driving research breakthroughs through our research priorities. Working closely with scientists, medical experts, academic institutions, pharmaceutical companies, other patient advocacy organizations and families, we drive research breakthroughs to deliver treatments and cures faster.
CURE conference 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. We have invited the most knowledgeable and engaged scientists and medical professionals from aroung the globe to speak at our conference.
Agenda & Poster Sessions
| Time | Session | Room | Speaker |
|---|---|---|---|
| Wednesday 7/17/24 | |||
| All Day | Mall of America Activities | On Your Own | Meet Up On Your Own |
| Take part in a fun Mall of America scavenger hunt designed with the help of our Minnesota Moms! | |||
| 9:00 AM – 9:45 AM | Conference Team Meeting | Isles Boardroom | 2024 Conference Planning Team |
| Meeting of the 2024 Conference Planning team. | |||
| 10:00 AM – 11:00 AM | Executive Committee Meeting | Isles Boardroom | BOD Executive Committees |
| Meeting of executive level Board of Directors leadership. | |||
| 11:00 AM – 12:00 PM | BOD Meeting | Isles Boardroom | Denise Croden, PMSF BOD President |
| Meeting of the Board of Directors. | |||
| 12:00 PM – 5:00 PM | Registration Open | Graffiti Hallway | Patty O’Boyle |
| Check in with us when you arrive. | |||
| 4:30 PM – 5:00 PM | Caregiver Training Session (Daycare) | Nokomis A-C | Plus One |
| Plus One Meetings, the daycare provider, holds a training session for all daycare caregivers prior to the conference. In addition to familiarizing themselves with the protocols and program for our event, daycare caregivers will learn about Phelan-McDermid syndrome from a seasoned parent. | |||
| 5:00 PM – 6:00 PM | Daycare Meet & Greet | Nokomis A-C | Plus One |
| The Caregiver Meet & Greet is a time for participants to meet their caregivers. This will help prepare the caregivers and familiarize the participants with the space and their caregiver, which will all help drop-off the following day to run more smoothly and help everyone feel more comfortable. | |||
| 5:00 PM – 6:00 PM | PMSF Store Open | Graffiti Hallway | Patty O’Boyle |
| Show off your PMSF pride with merchandise from our store. | |||
| 5:30 PM – 6:00 PM | Volunteer Orientation | Isles Boardroom | Patty O’Boyle & Diane Linnehan |
| For all conference volunteers, check in to receive your assignments. | |||
| 6:00 PM – 6:30 PM | New Member Meet & Greet | Lakes Ballroom A-D | Carla D’Imperio; Ronni Blumenthal, CEO; Diane Linnehan, Sr. Dir. of Operations; and The Founders |
| Join our Family Support Specialist, Carla D’Imperio, as well as CEO Ronni Blumenthal, Sr. Dir. of Operations Diane Linnehan, and the founders of PMSF, to meet other families who have joined the PMSF in the past year. There will be a short introduction from Carla followed by time to mingle. | |||
| 6:30 PM – 8:00 PM | Welcome Reception | Lakes Ballroom A-D | Ronni Blumenthal, CEO; Co-hosted by Neuren Pharmaceuticals; Performance by Elim Brookshire |
| Friends old and new will come together for an evening of fun, laughter, and community connection. (Included with your conference registration.) Enjoy entertainment by one of our talented siblings, Elim Brookshire. | |||
| Thursday 7/18/24 | |||
| 8:00 AM – 8:30 AM | Volunteer Orientation | Isles Boardroom | Patty O’Boyle & Diane Linnehan |
| For all conference volunteers, check in to receive your assignments. | |||
| 8:30 AM – 12:30 PM & 1:30 PM – 6:00 PM | Daycare | Cedar & Nokomis A-C | Plus One |
| Plus One Meetings will take care of your children and individuals with Phelan-McDermid syndrome for a fee while you enjoy what the conference has to offer. | |||
| 8:30 AM – 10:15 PM | Sensory Room | Harriet AB | Plus One |
| The sensory Room is an unsupervised play room for children attending the conference. This room will be in the conference center and filled with toys, games, and arts and crafts. Children under the age of 10 must be accompanied by an adult. There will be scheduled activities available as well as “open play” times. Please note: this is not a drop off program. | |||
| 8:30 AM – 10:00 AM | Deb Graham Siblings Session (1st – 4th Grade) | Minnetonka BC | Kiley Richards, LISW, Carla D’Imperio, & Stacey Brandjord, PhD, NCSP, CCC-SLP |
| Siblings, these sessions are just for you. You will have the chance to play some games and make a keepsake, as well as have a group discussion with other Phelan-McDermid sibs. These groups are broken out by age. | |||
| 8:45 AM – 9:45 AM | Opening Session & Keynote Speech | Lakes Ballroom A-D | Ronni Blumenthal, CEO & Liza Squires, MD Neuren Pharmaceuticals; Rick Guidotti |
| Join us in kicking off our conference! Keynote speaker Rick Guidotti from Positive Exposure will ring in the 2024 Family Conference. | |||
| 10:00 AM – 10:10 AM | Scientific Welcome & Overview | Lakes Ballroom A-D | Kate Still, PhD |
| Join us in kicking off the CURE and CARE sessions of the conference, as Dr. Still summarizes the content of upcoming presentations, the intention behind them, and PMSF’s strategic priorities in research. | |||
| 10:10 AM – 11:15 AM | Finding & Testing New Cutting Edge Therapies | Lakes Ballroom A-D | Hala Harony-Nicolas, PhD; Guoping Feng, PhD; & Xian Gao, PhD |
| In order to find new treatments for a disorder, the disorder is usually studied in the laboratory in cell or animal “models” which mimic the disease. These studies increase understanding of the disorder, potential ways to treat the disorder, and give a simple way to test the impact of a new therapy before testing in humans. In this session, Dr. Harony-Nicolas, Dr. Feng, and Dr. Gao will discuss real-world examples of studying Phelan-McDermid syndrome in the lab and testing new therapies. PMSF funds this type of research alongside clinical research through our Research Grants Program. | |||
| 10:30 AM – 12:00 PM | Deb Graham Siblings Session (5th – 8th Grade) | Minnetonka B | Kiley Richards, LISW, Carla D’Imperio, & Stacey Brandjord, PhD, NCSP, CCC-SLP |
| Siblings, these sessions are just for you. You will have the chance to play some games and make a keepsake, as well as have a group discussion with other Phelan-McDermid sibs. These groups are broken out by age. | |||
| 10:30 AM – 12:00 PM | Deb Graham Siblings Session (9th – 12th Grade) | Minnetonka C | Kiley Richards, LISW, Carla D’Imperio, & Stacey Brandjord, PhD, NCSP, CCC-SLP |
| Siblings, these sessions are just for you. You will have the chance to play some games and make a keepsake, as well as have a group discussion with other Phelan-McDermid sibs. These groups are broken out by age. | |||
| 11:15 AM – 11:30 AM | Coffee Break | Lakes Foyer | Coffee Club Sponsors |
| Recharge with some fresh coffee. | |||
| 11:15 AM – 12:15 PM | Your Role in Research: Phelan-McDermid syndrome Natural History Study Results & DataHub and Other Research Studies | Lakes Ballroom A-D | Alex Kolevzon, MD & Kate Still, PhD; Intro by Liza Squires, MD Neuren Pharmaceuticals |
| Family participation in clinical research offers direct insights into how Phelan-McDermid progresses, is best managed, and can be measured. Dr. Kolevzon will share highlights from his leadership in the 9+ year Natural History Study and its impact on medical research. Dr. Still will cover the impact of family participation in external research studies circulated by the PMSF, and internal studies, such as the PMSF-run genetic registry, the DataHub. | |||
| 12:00 PM – 12:30 PM | Chaperone Orientation | Minnetonka A | Carla D’Imperio |
| For Nickelodeon Universe chaperones only to check-in and receive instructions. | |||
| 12:15 PM – 1:45 PM | Lunch | On Your Own | N/A |
| Enjoy food from the Grab ‘n Go or from the food court in the Mall of America! | |||
| 12:30 PM – 1:45 PM & 4:00 PM – 6:00 PM | PMSF Store Open | Graffiti Hallway | Patty O’Boyle |
| Show off your PMSF pride with merchandise from our store. | |||
| All Day | Photos with Positive Exposure | Sky Bridge & Minnetonka Foyer | Rick Guidotti |
| Rick Guidotti will be shooting beautiful, naturally lit portraits on the Sky Bridge and in the Minnetonka Foyer on Thursday and Friday. | |||
| 1:45 PM – 2:30 PM | Overview of Clinical Trials | Lakes Ballroom A-D | Elizabeth Berry-Kravis, MD, PhD |
| The number and types of clinical trials in Phelan-McDermid syndrome is increasing over time. These categories include: repurposed drugs, drugs which aim to improve brain signaling, specific symptom-management drugs, drugs which target genetics, and others. Dr. Berry-Kravis will give an overview of current treatment strategies being tested in clinical trials for Phelan-McDermid syndrome, and similar neurodevelopmental disorders. She will also cover the phases of trials, general trial design, and what to consider for participation. | |||
| 1:45 PM – 2:30 PM | Grandparents & Extended Family Support Group* | Minnetonka A | Kiley Richards, LISW |
| The Support Group For the Phelan-McDermid Syndrome Caregiver is an open group for grandparents and extended family members of Phelan-McDermid syndrome individuals. Participants will be able to process, understand, and cope with the mental health symptoms that can accompany the ongoing and complex trauma and loss that comes with a Phelan-McDermid syndrome diagnosis. | |||
| 3:00 PM – 6:00 PM | Sea Life Aquarium | Group Activity | Carla D’Imperio |
| Kids will embark on an underwater journey filled with awe-inspiring sea creatures, interactive exhibits, and aquatic adventures. | |||
| 2:45 PM – 4:00 PM | Emerging Clinical Trials for New Therapies | Lakes Ballroom A-D | Neuren Pharmaceuticals & Jaguar Gene Therapy |
| Some emerging clinical trials in Phelan-McDermid syndrome are testing new drugs which are not yet approved by the FDA for any other conditions. In this session, representatives from two companies, Jaguar Gene Therapy, and Neuren Pharmaceuticals, will cover updates on their current programs for Phelan-McDermid syndrome which have reached the clinical trials stage of development. | |||
| 2:45 PM – 3:45 PM | Phelan-McDermid Dads Session | Minnetonka ABC | Mike Cento & Mike Riley |
| Join our Dads session to get together with other Phelan-McDermid syndrome dads to get to know one another and share your experience of being a father to an individual with Phelan-McDermid syndrome. | |||
| 3:45 PM – 4:15 PM | Coffee Break | Minnetonka Foyer & Lakes Foyer | Coffee Club Sponsors |
| Recharge with some fresh coffee. | |||
| 4:15 PM – 5:15 PM | Phelan-McDermid Moms Session | Minnetonka ABC | Cathy Bottini, Andrea Papageorgiou, Kris Graff, & Jamie Vande Hey |
| Join our Moms session for a unique opportunity to build meaningful connections with fellow moms. Moms will get to know one another and leave this session with a feeling of connection and a sense of belonging. | |||
| 4:15 PM – 5:15 PM | Posters Session | Lakes Foyer | Various Presenters |
| View various scientific posters and meet the minds behind them. | |||
| 5:30 PM – 7:00 PM | Scientific Summit | MOA Lounge | Researchers, Clinicians, & Scientists |
| A meeting of the minds for our researchers, clinicians, and scientists to exclusively mingle and chat. | |||
| 7:00 PM – 10:00 PM | Community Dinner | Lakes Ballroom A-D & Minnetonka ABC | Ronni Blumenthal, CEO |
| Join us for an unforgettable evening at our Community Dinner! Begin the night with a family-style dinner among families, researchers, clinicians, sponsors, industry professionals, PMSF staff and PMSF board members that will foster connections. Enjoy a family video and great conversation with others in the Phelan-McDermid community. | |||
| Friday 7/19/24 | |||
| 8:30 AM – 12:45 PM & 1:45 PM – 6:00 PM | Daycare | Cedar & Nokomis A-C | Plus One |
| Plus One Meetings will take care of your children and individuals with Phelan-McDermid syndrome for a fee while you enjoy what the conference has to offer. | |||
| 8:30 AM – 9:45 PM | Sensory Room | Harriet AB | Plus One |
| The sensory Room is an unsupervised play room for children attending the conference. This room will be in the conference center and filled with toys, games, and arts and crafts. Children under the age of 10 must be accompanied by an adult. There will be scheduled activities available as well as “open play” times. Please note: this is not a drop off program. | |||
| 8:45 AM – 9:45 AM | Immersive Genetics 101 | Lakes Ballroom A-D | Tess Levy, MSc |
| Genetic testing is a powerful tool which leads to the diagnosis of Phelan-McDermid syndrome, but the implications can be confusing to decipher for families. In this session, Tess Levy will cover an introduction to genetics, the genetic causes of Phelan-McDermid syndrome, and how to read a genetic report. She will cover types of testing and follow-up testing, information about how genotypes can be associated with specific features of Phelan-McDermid, and introduce a genetic consult program available through PMSF. | |||
| 8:45 AM – 9:45 AM | Neuropsychiatric Meet-Up | Minnetonka A | Teresa “Tesi” Kohlenberg, MD |
| Dr. Tesi Kohlenberg will be offering an informal meet-up for families whose children or adult children are going through or have gone through episodes of neuropsychiatric illness. If you have met with Dr. Kohlenberg about your child’s psychiatric health; if you have participated in our “Coping With Neuropsychiatric Episodes” Support Group; or if your child has been diagnosed with catatonia, depression, psychosis, anxiety, or mania, then this meet-up would be a great opportunity for you to connect with others. | |||
| 8:45 AM – 9:45 AM | Caregiver Support Group* | Isles Boardroom | Kiley Richards, LISW |
| The Support Group For the Phelan-McDermid Syndrome Caregiver is an open group for parents, guardians, and primary caregivers of Phelan-McDermid syndrome individuals. Participants will be able to process, understand, and cope with the mental health symptoms that can accompany the ongoing and complex trauma and loss that comes with a Phelan-McDermid syndrome diagnosis. | |||
| 9:45 AM – 3:30 PM | Nickelodeon Universe | Sibling Field Trip | Carla D’Imperio |
| Siblings will share an unforgettable day as they enjoy thrilling rides, playful characters, and endless laughter. This chaperoned trip is for siblings only. | |||
| 10:00 AM – 11:00 AM | U.S. & International Clinical Care Guidelines | Lakes Ballroom A-D | Sid Srivastava, MD & Michael Schön |
| Two sets of international clinical guidelines were released in 2023 for the monitoring, management, and treatment of symptoms in Phelan-McDermid syndrome. Dr. Srivastava and Dr. Schön will summarize these guidelines, including categories like genetics, communication, sleep, GI disorders, behavioral interventions, neuropsychiatric illness, seizures, lymphedema and more. They will give an overview of the process for devising these guidelines, explain how families can use these guidelines, and where to find these current resources. | |||
| 10:00 AM – 11:00 AM | Augmentative and Alternative Communication – Supporting Communication and Connection for All | Minnetonka ABC | Kate Ahern, MEd (Virtual) |
| This session addresses implementing augmentative and alternative communication, regardless of which device or system the child uses or how old the user is. We will consider the purpose of AAC, some options and examine using the Motivate, Model, Move Out of the Way framework. | |||
| 10:00 AM – 12:00 PM | Posters Session | Lakes Foyer | Various Presenters |
| View various scientific posters and meet the minds behind them. | |||
| 11:00 AM – 11:15 AM | Coffee Break | Minnetonka Foyer & Lakes Foyer | Coffee Club Sponsors |
| Recharge with some fresh coffee. | |||
| 11:15 AM – 12:15 PM | 4 Paws for Ability Service Dogs | Minnetonka BC | Meredith Koerner |
| Learn all the basics about service dogs and 4 Paws For Ability with a virtual presentation from a 4 Paws volunteer. Then meet the service dogs in-person! | |||
| 11:15 AM – 12:30 PM | Neuropsychiatric Illness, Regression, & Challenging Behaviors | Lakes Ballroom A-D | Teresa “Tesi” Kohlenberg, MD |
| A subset of people with PMS develop new and serious psychiatric illness during their teen or young adult years, sometimes accompanied by loss of skills (regression). Dr. Kohlenberg will share videos showing what these problems can look like, review what we have learned about how to manage these problems, and share ideas about prevention. She will also speak about the supports available through the Foundation, including the Neuropsychiatric Consult Group. | |||
| 12:30 PM – 2:00 PM | Lunch | On Your Own | N/A |
| Enjoy food from the Grab ‘n Go or from the food court in the Mall of America! | |||
| 12:30 PM – 2:00 PM & 5:30 PM – 6:30 PM | PMSF Store Open | Graffiti Hallway | Patty O’Boyle |
| Show off your PMSF pride with merchandise from our store. | |||
| 2:00 PM – 3:00 PM | Epilepsy & EEG Abnormalities | Lakes Ballroom A-D | Jimmy Holder, MD |
| Approximately one-third of people with Phelan-McDermid syndrome have a diagnosis of epilepsy. In this session, Dr. Holder will share background information on the types of seizures, review the most current research and EEG findings, discuss genetics associated with epilepsy, current knowledge of best treatments, and clinical lessons learned at the Texas Children’s Hospital. | |||
| 2:00 PM – 3:00 PM | Caregiver Support Group* | Isles Boardroom | Kiley Richards, LISW |
| The Support Group For the Phelan-McDermid Syndrome Caregiver is an open group for parents, guardians, and primary caregivers of Phelan-McDermid syndrome individuals. Participants will be able to process, understand, and cope with the mental health symptoms that can accompany the ongoing and complex trauma and loss that comes with a Phelan-McDermid syndrome diagnosis. | |||
| 2:00 PM – 3:00 PM | Understanding Behaviors & Underlying Health Issues | Minnetonka A | Ann Neumeyer, MD |
| Join Dr. Neumeyer as she discusses how new behaviors or regressions can signal underlying medical issues in children and adults with Phelan-McDermid syndrome. This session will provide insights into the clinical evaluation process, helping to identify and address the potential medical causes of these behavioral changes. | |||
| 2:00 PM – 4:00 PM | Communications Mini Fair | Minnetonka BC | Carla D’Imperio |
| Come and visit our first-ever communications mini fair. You will have the opportunity for hands-on learning at six different tables featuring: low-tech AAC, high-tech AAC, PROMPT method, sign language, speech therapy, spelling, and Eye Gaze. | |||
| 3:15 PM – 4:15 PM | Gastrointestinal Disorders | Lakes Ballroom A-D | William “Billy” Bennett, Jr., MD, MS |
| Many people with Phelan-McDermid syndrome experience gastrointestinal disorders such as constipation, diarrhea, cyclic vomiting, reflux, gastroparesis, trouble with feeding, and others. Dr. Bennett will cover the current state of the research for GI disorders in Phelan-McDermid syndrome and other neurodevelopmental disorders, diagnosis and treatment avenues, and resources. Dr. Bennett will also cover a collaborative initiative led in part by the Foundation, called CANDID – the Consortium for Autism, Neurodevelopmental Disorders and Digestive Diseases. | |||
| 3:15 PM – 4:15 PM | Everyday Advocacy Panel | Minnetonka A | Priscilla Hackstadt, Laraleigh Windom, Chrissy Hood & Janet Wilson |
| Hear first-hand from some of the most powerful advocates there are: Phelan-MCDermid syndrome moms. Learn about how to be an advocate everyday in your home, community, and state. | |||
| 4:00 PM – 4:30 PM | Coffee Break | Minnetonka Foyer & Lakes Foyer | Coffee Club Sponsors |
| Recharge with some fresh coffee. | |||
| 4:30 PM – 5:30 PM | Sleep | Lakes Ballroom A-D | Ann Neumeyer, MD |
| Sleep problems occur at high rates in Phelan-McDermid syndrome, such as falling asleep, staying asleep, sleep duration, parasomnias, and others. In this session, Dr. Neumeyer will both discuss her current research in sleep in Phelan-McDermid syndrome and autism, and she will share resources and tools for managing sleep disorders. | |||
| 4:30 PM – 5:15 PM | Phelan-McDermid Peer Connection Meet-Up | Minnetonka A | Cynthia Schauss |
| This meet-up is for you, our community of individuals with Phelan-McDermid syndrome who want to hang out, play games, and interact with your peers! | |||
| 4:30 PM – 5:30 PM | How It All Began: The Founders | Minnetonka BC | Dr. Katy Phelan, Sue Lomas, Curtis Rogers, MD, & Nick Assendelft |
| Come listen to the folks who started it all! | |||
| 5:45 PM | Phelan Lucky” Photo Op | Minnetonka ABC | Kelsie Adams & Devin Wilber |
| Throw on your “Phelan Lucky” T-shirt and meet us for a giant photo! Say cheese! | |||
| 6:30 PM – 9:30 PM | Summer Camp Dance Party | Lakes Ballroom A-D | N/A |
| Gather with us for a delightful family event at our Summer Camp-themed party. Bring your best summer camp looks and let’s dance together with our Phelan-McDermid community. | |||
| Saturday 7/20/24 | |||
| 8:30 AM – 12:30 PM & 1:30 PM – 6:00 PM | Daycare | Cedar & Nokomis A-C | Plus One |
| Plus One Meetings will take care of your children and individuals with Phelan-McDermid syndrome for a fee while you enjoy what the conference has to offer. | |||
| 8:30 AM – 9:00 PM | Sensory Room | Harriet AB | Plus One |
| The sensory Room is an unsupervised play room for children attending the conference. This room will be in the conference center and filled with toys, games, and arts and crafts. Children under the age of 10 must be accompanied by an adult. There will be scheduled activities available as well as “open play” times. Please note: this is not a drop off program. | |||
| 8:45 AM – 9:45 AM | Caregiver Coping Toolkit | Minnetonka A | Kiley Richards, LISW |
| Join Kiley Richards, LISW, for a hands-on session where you will learn coping strategies to help you manage the day-to-day mental helath challenges that caring for a child or adult with Phelan-McDermid syndrome can present. Be ready for activities to practice and discuss! | |||
| 8:45 AM – 9:45 AM | Nutrition & the Immune System for Individuals with Phelan-McDermid | Lakes Ballroom A-D | Chardell Buchanan, MA, RDN |
| Join us to learn how nutrition can strengthen your child’s immune system, focusing on the gut microbiota’s vital role in health. Discover practical guidelines for a high-fiber, plant-rich diet that supports immunity. We’ll cover key vitamins, minerals, and when supplements might be necessary, providing you with straightforward, actionable steps to boost your child’s immune health now. | |||
| 8:45 AM – 9:45 AM | Clinical, Genetic, and Therapy Insights from Research at the Univ. of Modena, Italy | Minnetonka BC | Antonio Persico, MD |
| The Phelan-McDermid Syndrome Foundation has several global partners – and research, including clinical trials, are rapidly advancing internationally. In this session, Dr. Persico will describe current research at the University of Modena in Italy, focused on 1) results from a clinical trial for a metabolic support therapy, 2) clinical characterization of a large cohort of people with Phelan-McDermid, and 3) linking of genetics to symptoms. He will also describe his work and advisory role at the Italian Association for Phelan-McDermid syndrome (AISPHEM). | |||
| 9:30 AM – 12:00 PM | Crayola Experience | Group Activity | Carla D’Imperio |
| Kids can unleash their imagination through vibrant activities, hands-on crafts, and more. | |||
| 9:30 AM – 12:00 PM | Climb Zone | Group Activity | Carla D’Imperio |
| Kids will reach new heights as they conquer themed climbing walls. | |||
| 10:00 AM – 11:00 AM | Understanding and Managing Lymphedema Symptoms | Minnetonka A | Dana Winrow, PT, CT-LANA |
| This session will focus on lymphedema in Phelan-McDermid syndrome. Learn about what lymphedema is and how you can relieve symptoms of lymphedema at home. | |||
| 10:00 AM – 11:00 AM | Decoding State Systems Panel | Lakes Ballroom A-D | Ali Niemi, Rick Wood, & Janet Wilson |
| Come hear our panelists untangle the mysteries of accessing state supports like SSI, Waivers, Medicaid, and ABLE accounts. Here from local Minnesota experts about topics that will transfer to navigating supports in other states as well. | |||
| 10:00 AM – 12:15 PM | Transitions Across the Life Course | Minnetonka BC | Lynda Anderson & Renata Ticha of UMN Insitute on Community Integration |
| Come join experts from the Institute on Community Integration at the University of Minnesota as we explore “Life Course Theory”. You will learn about life stages and transitions (ie transition to adulthood) and how caregivers and guardians can make choices within the constraints of the system. | |||
| 11:00 AM – 11:15 AM | Coffee Break | Minnetonka Foyer & Lakes Foyer | Coffee Club Sponsors |
| Recharge with some fresh coffee. | |||
| 11:15 AM – 12:15 PM | Pay It Forward: Help PMSF Continue Its Mission | Minnetonka A | Shira Johnson |
| Join us to learn ways to help PMSF support & connect families, improve medical care, and drive research breakthoughs. This fun session wil include door prizes and awards. | |||
| 11:15 AM – 12:15 PM | Cross-Disorder Research Efforts | Lakes Ballroom A-D | Audrey Thurm, PhD |
| Phelan-McDermid syndrome shares features with other neurodevelopmental disorders, such as symptoms, assessments, and treatment strategies. PMSF frequently collaborates with other advocacy groups to make shared progress. In this session, Dr. Thurm will share takeaways from a few of these cross-disorder research efforts, such as the Inchstone Project, AGENDA, and others. | |||
| 12:15 PM – 1:45 PM | Lunch | On Your Own | N/A |
| Enjoy food from the Grab ‘n Go or from the food court in the Mall of America! | |||
| 12:30 PM – 2:30 PM | PMSF Store Open | Graffiti Hallway | Patty O’Boyle |
| Show off your PMSF pride with merchandise from our store. | |||
| 12:45 PM – 1:30 PM (During Lunch) | RECORDING: Augmentative and Alternative Communication – Supporting Communication and Connection for All | Lakes Ballroom A-D | Kate Ahern, MEd (Virtual / RECORDING) |
| This session addresses implementing augmentative and alternative communication, regardless of which device or system the child uses or how old the user is. We examine using the Motivate, Model, Move Out of the Way framework. | |||
| 1:45 PM – 2:45 PM | Navigating Legal Processes | Minnetonka BC | Rick Wood |
| Please join estate planning and family law attorney and Phelan-McDermid syndrome dad, Rick Wood, as he shares valuable information about planning for your child’s future with various milestones and legal processes in mind. From guardianship to estate planning, this session will give a high-level overview of how to navigate legal processes as a parent of a child or adult with Phelan-McDermid syndrome. Special emphasis will be on special needs trusts, presented in plain language, ABLE accounts, Medicaid eligibility, and self-determination programs. | |||
| 1:45 PM – 2:45 PM | Residential Options Panel | Lakes Ballroom A-D | Pamela Kurtz; Brandon Barnett; Cindy Barnett, LCSW; Rebecca Remberg; & Amy O’Donnell |
| It’s tricky to know what’s out there in terms of residential living options for your child as they child get older. Hear from our panel of Phelan-McDermid Syndrome parents discuss their experience of choosing and placing their children into alternative housing. | |||
| 2:15 PM – 3:15 PM | Caregiver Support Group* | Isles Boardroom | Kiley Richards, LISW |
| The Support Group For the Phelan-McDermid Syndrome Caregiver is an open group for parents, guardians, and primary caregivers of Phelan-McDermid syndrome individuals. Participants will be able to process, understand, and cope with the mental health symptoms that can accompany the ongoing and complex trauma and loss that comes with a Phelan-McDermid syndrome diagnosis. | |||
| 3:00 PM – 3:45 PM | Healthy Eating for Caregivers | Lakes Ballroom A-D | Chardell Buchanan, MA, RDN |
| We’ve all heard about self-care, but the hectic pace of day-to-day life often hinders things like spa days and massages. Join this session to learn some concrete ways to take better care of yourself through diet and nutrition. You’re going to learn to use a tool to make sure all your meals are healthy. We’ll plan some healthy dinners to get you through the next few days, complete with a shopping list. Life is busy, but healthy eating can be easy and enjoyable. | |||
| 4:00 PM – 4:45 PM | Closing Session & Awards | Lakes Ballroom A-D | Ronni Blumenthal, CEO |
| Join us to celebrate a wonderful time together and honor some special community members! | |||
| 6:00 PM – 9:00PM | Caregivers’ Evening Out | Cedar & Nokomis A-C | Plus One |
| Enjoy a night on the town when you drop off your children and/or individuals with Phelan-McDermid syndrome for a fee with our extended evening care. |
| Thursday 7/18/24 | |||
|---|---|---|---|
| 8:45 AM – 9:45 AM | Opening Session & Keynote Speech | Ronni Blumenthal, CEO & Liza Squires, MD Neuren Pharmaceuticals; Rick Guidotti | |
| 10:00 AM – 10:10 AM | Scientific Welcome & Overview | Kate Still, PhD | |
| 10:10 AM – 11:15 AM | Finding & Testing New Cutting Edge Therapies | Hala Harony-Nicolas, PhD; Guoping Feng, PhD; & Xian Gao, PhD | |
| 11:30 AM – 12:30 PM | Your Role in Research: Phelan-McDermid syndrome Natural History Study Results & DataHub and Other Research Studies | Alex Kolevzon, MD & Kate Still, PhD; Intro by Liza Squires, MD Neuren Pharmaceuticals | |
| 1:45 PM – 2:30 PM | Overview of Clinical Trials | Elizabeth Berry-Kravis, MD, PhD | |
| 2:45 PM – 4:00 PM | Emerging Clinical Trials for New Therapies | Neuren Pharmaceuticals & Jaguar Gene Therapy | |
| Friday 7/19/24 | |||
| 8:45 AM – 9:45 AM | Immersive Genetics 101 | Tess Levy, MSc | |
| 10:00 AM – 11:00 AM | U.S. & International Clinical Care Guidelines | Sid Srivastava, MD & Michael Schön | |
| 11:15 AM – 12:30 PM | Neuropsychiatric Illness, Regression, & Challenging Behaviors | Teresa “Tesi” Kohlenberg, MD & Co. | |
| 12:45 PM – 1:45 PM | Augmentative and Alternative Communication – Supporting Communication and Connection for All | Kate Ahern, MEd (Virtual) | |
| 2:00 PM – 3:00 PM | Epilepsy & EEG Abnormalities | TBD | |
| 3:15 PM – 4:15 PM | Gastrointestinal Disorders | William “Billy” Bennett, Jr., MD, MS | |
| 4:30 PM – 5:30 PM | Sleep | Ann Neumeyer, MD | |
| Saturday 7/20/24 | |||
| 8:45 AM – 9:45 AM | Nutrition and the Immune System | Chardell Buchanan, MA, RDN | |
| 10:00 AM – 11:00 AM | Decoding State Systems Panel | Ali Niemi, Rick Wood, & Janet Wilson | |
| 11:15 AM – 12:15 PM | Cross-Disorder Research Efforts | Audrey Thurm, PhD | |
| 1:45 PM – 2:45 PM | Residential Options Panel | Pamela Kurtz, Brandon Barnett, Cindy Barnett, LCSW, Rebecca Remberg, & Amy O’Donnell | |
| 3:00 PM – 3:45 PM | Healthy Eating for Parents & Caregivers: Plate Method and Meal Planning | Chardell Buchanan, MA, RDN | |
| 4:00 PM – 4:45 PM | Closing Session & Awards | Ronni Blumenthal, CEO | |
| 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 |
| PYC Therapeutics – Sri Mudumba | PYC Therapeutics |
| Sheldon Garrison, PhD; Research Scientist | Rogers Behavioral Health |
Family Resources
We know that attending the conference takes a great deal of planning. Our past attendees have told us that the experience can be “life changing” so we want to help you plan for a great experience. We will update this section with resources as they become available:
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
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
Together
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.
