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Uniting for a Brighter Future

The SKDEAS Family Meeting is not just an event; it's a movement. Every two years, families, researchers, and supporters from around the globe come together to share, learn, and inspire. This year, we gather in Philadelphia to continue our journey toward understanding and advocating for Skraban-Deardorff Syndrome.

What to Expect at the 4th Biennial SKDEAS Family Meeting

Community Connections

A vibrant gathering where lasting relationships are forged with those affected by Skraban-Deardorff Syndrome. This meeting offers a unique opportunity to connect with both new and familiar faces, sharing support and cultivating strong bonds of companionship.



Enlightening sessions that deliver the latest research and innovations. A diverse lineup of speakers including parents, caregivers, therapists, and others will present a wide range of topics, offering valuable perspectives and insights. Additionally, our esteemed medical team will discuss the latest advancements in research and patient care, providing practical and up-to-date information crucial for Skraban-Deardorff Syndrome.



Engage in interactive conversations and advocacy efforts that aim to amplify our collective influence. These activities are focused on raising awareness, improving patient care, and increasing support and funding for ongoing research.

How to Show Your Support

Check out our Amazon wishlist to see all the fun and useful things we hope to share and enjoy together! Please consider helping out by donating or assisting with a purchase.

Consider partnering with us as a sponsor. We offer various sponsorship packages designed to provide valuable benefits and recognition. Sponsorship is an excellent opportunity for organizations to demonstrate their commitment to supporting families affected by Skraban-Deardorff Syndrome. Benefits of sponsorship include:

  • Visibility: Prominent recognition on event materials, our website, and social media channels.

  • Engagement: Opportunities to connect with families, researchers, and healthcare professionals.

  • Impact: Directly contributing to the success of an event that makes a real difference in the lives of those affected by Skraban-Deardorff Syndrome.

Learn more about the specific benefits of each package and how your support can make a difference.

Every donation, no matter the size, moves us closer to our goal. Your generosity can directly impact the success of our Family Meeting, ensuring we provide the best possible experience for all attendees. Funds raised will go towards:

  • Event Logistics: Ensuring a seamless experience for all participants.

  • Catering: Providing meals and refreshments during the event.

  • Speakers: Bringing in experts to share the latest research and clinical insights.

  • Resources for Families: Offering materials and support to attendees.

By donating, you become a vital part of our community, helping to create a future where every family affected by Skraban-Deardorff Syndrome has access to the knowledge and support they need.

Event Agenda

(more information to follow)

Note: All times are Eastern Standard Time and all events will take place at

Children's Hospital of Philadelphia (CHOP)

8:00am/9:00am - 5:00pm
Clinic Appointments
5:00pm - 8:00pm
Family Meet & Greet

Explore and Enjoy: Family Activities Near CHOP

Discover the Heart of Philadelphia: Dive into the city's vibrant history with visits to iconic sites like the Liberty Bell, Betsy Ross House, and Independence Hall. Engage in enlightening walking tours that illuminate the past and present of this historic city.

  • Activities: A mix of indoor and outdoor explorations await.

  • Admission: Prices vary; parking is additional.

  • Planning Your Visit: Attractions have varying distances and hours. Check Visit Philly for the latest information and to plan your itinerary around these must-see landmarks.

Ignite Curiosity at The Franklin Institute: Engage with science in hands-on ways at this premier museum. Featuring a range of exhibits, including a planetarium, interactive Lego displays, and sensory-friendly backpacks for an inclusive experience. Perfect for the young and young-at-heart

  • Admission: $21 for children under 14, $25 for adults. Parking: $25.

  • Accessibility: Discounts available for personal care attendants at check-in.

  • Location & Hours: 222 N. 20th St, Philadelphia, PA. Open 9:30 am - 5 pm, 2.8 miles from CHOP.

  • Explore More: Visit The Franklin Institute's website for additional details and exhibit costs.

Foster Imagination and Exploration: The Please Touch Museum is a haven of interactive and sensory-friendly experiences designed for children to learn through play. Featuring a blend of traveling and permanent exhibits, this museum creates an inclusive environment for all families.

  • Admission: Around $22; parking $16. Discounts available for SNAP/EBT cardholders, military, fire, EMT, and police personnel.

  • Location & Hours: 4231 Avenue of the Republic, Philadelphia, PA. Just 2.6 miles from CHOP, with varying hours.

  • Discover More: Visit Please Touch Museum's website for detailed information.

Delve into the Natural World: The Academy of Natural Sciences offers an indoor haven for exploration, featuring sensory-friendly mornings to accommodate all visitors. It’s a place where curiosity about the natural world is ignited and nurtured.

  • Admission: Adults $27, Children (2-12) $23, Seniors $24, with special discounts available.

  • Location & Accessibility: 1900 Benjamin Franklin Pkwy, Philadelphia, PA, only 2.7 miles from CHOP.

  • Learn More: For a closer look at exhibits and special programs, visit The Academy of Natural Sciences website.

Embrace Nature and Wildlife: The Philadelphia Zoo offers a blend of indoor and outdoor attractions, inviting visitors to discover the wonders of wildlife. With activities and exhibits that may carry an additional fee, there's always something new to explore.

  • Admission: Ranges from $20 to $25 per person, with possible additional parking fees.

  • Location & Hours: Situated 3.9 miles from CHOP, open from 9:30 am to 5 pm.

  • Explore More: To plan your visit and check out the attractions, head to Philadelphia Zoo's website.

Discover Aquatic Wonders: Just across the river in Camden, Adventure Aquarium offers a mesmerizing journey through aquatic habitats, featuring both indoor and outdoor attractions, and a special play area for children.

  • Admission: Approximately $35.99 per person. Parking around $10.

  • Highlights: Engage with a variety of aquatic life in immersive exhibits.

  • Location & Times: 1 Riverside Drive, Camden, NJ. 6.5 miles from CHOP, open 9:30 am – 5 pm.

  • Dive Deeper: Visit Adventure Aquarium's website for more information.

Join your favorite Sesame Street characters for a day of rides, games, and shows at Sesame Place. It’s an outdoor amusement park filled with fun and laughter for the whole family.

  • Admission: $41.99-$44.99, discounts available, parking extra.

  • Location & Hours: 29.4 miles from CHOP, 10 am – 7 pm.

  • Explore: Sesame Place Website

--Attractions further from CHOP that have Hotels nearby--

Escape to the serene and picturesque landscapes of Lancaster, PA, where Pennsylvania Dutch Country offers a blend of outdoor and indoor activities alongside unique shopping experiences. Immerse yourself in the culture and charm of this historic region.

  • Admission: Varies by attraction.

  • Location & Experience: 80 miles from CHOP, with hours varying by attraction.

  • Plan Your Visit: For more on what to see and do, visit Discover Lancaster.

Dutch Wonderland, nestled in Pennsylvania Dutch Country, is a family-friendly amusement park filled with rides, games, and attractions designed with children in mind. It's an outdoor adventure park offering an accessibility pass for those who need it.

  • Admission: $39.99 per person.

  • Location & Hours: 2249 E Lincoln Highway, Lancaster, PA, 65 miles from CHOP. Open from 9 am to 9 pm.

  • Discover Magic: Plan your visit by checking Dutch Wonderland for more details.

Discover the charm of Peddler's Village in Lahaska, PA, a picturesque outdoor setting where food and shopping come together in a delightful experience. This village offers a variety of attractions, each with its own unique hours.

  • Enjoyment: Food, shopping, and outdoor activities.

  • Location: At the crossroads of Routes 202 and 263 in Lahaska, PA.

  • Visit Us: For details on specific attractions and their hours, head to Peddler's Village Website.

Experience the thrill of Wildwoods, a vibrant destination with a bustling boardwalk, exciting games, delicious food, and comfortable hotels. It's the perfect beachside getaway for families looking to make lasting memories.

  • Attractions: Boardwalk, games, food, hotels.

  • Location: 91 miles from CHOP, with each attraction having different hours.

  • Explore More: Visit Wildwoods website for more details on what to do and see.

--The New Jersey Shore (1-2 hours away from CHOP, several options)--

Cape May Zoo offers a mostly outdoor experience where families can explore wildlife without an admission fee, though donations are welcome. With free parking and a variety of animals to see, it's an accessible and enjoyable day out for everyone.

  • Admission: Free, donations appreciated.

  • Location & Hours: 707 Route 9 North, Cape May, NJ, 80 miles from CHOP, open 10 am – 3:30 pm.

  • Plan Your Visit: For more information, check Cape May County's website.

Embrace the charm of Ocean City with its bustling boardwalk, thrilling games, delightful food, and welcoming hotels. This beachside paradise offers a plethora of activities with hours that vary by attraction, ensuring a memorable visit for families and visitors of all ages.


Experience the iconic Seaside Heights, famous for its lively boardwalk, entertaining games, delicious food, and welcoming hotels. Dive into the heart of the Jersey Shore.

  • Please note that hours, days, and prices may change with any activities or attractions.   Some may need advance reservations.  Please refer to the website for accurate, up to date information.  

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