Conference Agenda:

Monday, July 13

10:00am-11:30am: Registration/Check-in/Work on Poster
10:30-11:30am: Sibling Workshop- Meet and check in near registration table
12:00-1:30pm: Family Luncheon/Welcome and Announcements/Slideshow
1:30-1:45pm: Childcare check-in
1:45-2:15pm: 28 years of Jacobsen Syndrome Research with Dr. Paul Grossfeld M.D., UCSD, RCHSD
2:30-3:15pm: Keynote Speaker: Peter Fekete

Tuesday, July 14

8:15-9:00am: Sibling Workshop
9:00-9:45am: Genetic Counseling Considerations for 11th Chromosome Abnormalities with Laura Oehlman, MD,MS, CGC; Riley Children’s Health, Medical and Molecular Genetics
10:00-10:45am: Nourishing Futures: Gentle Nutrition Strategies for Children with Developmental Needs with Kate Beard, MA, RDN, CSPCC, LD; Riley Multi-Specialty Clinics
10:45-11:45am: Immunological aspects of 11q disorders with Virgil Dalm M.D. PhD, Erasmus MC, The Netherlands
12:00pm-1:00pm: Lunch Break (Please pick up children from the childcare)
1:00-2:00pm: Panel Discussion -Adults with 11q Disorders—the Real Experts!
2:00-2:45pm: The Global View of Feeding: Breaking down mealtime into smaller bites with Colleen Wasemann, OTD, MS, OTR, CLC
2:45-3:30pm: Advocating Together: Early Intervention, Special Education, and Family-School Partnerships with Kelsey Biswanger, 11q Mom and PTIC Professional

3:30-4:15pm: Parent Led Break-out Sessions- Based on age of child with 11q diagnosis

Option 1: Managing Multiple Medical Issues (Led by Beth Bromund)
Option 2: Managing relationships and dating (Led by Jessica Fekete)
Option 3: Teaching Self-Advocacy (Led by Jacque Martin)

4:15-5:00pm: Parent Led Break-out Sessions

Option 1: IEP’s, Early intervention, and advocating for your child (Led by Maureen Craver and Kelsey Biswanger)
Option 2: Getting involved in disability advocacy efforts (Led by Claire DeCamp)
Option 3: Grandparenting and extended family support: More than your average grandparent (Led by Janene and Dwayne Bartels)
Option 4: Adults with 11q disorders (this session is specifically for adults with 11q disorders to connect on their own or with the help of a caregiver)

7:00-8:30pm: Adult Reception (Passed Hors d’oeuvres and cash bar)

Childcare available for those signed up for the children’s program.

Wednesday, July 15

8:15-9:00am: Sibling Workshop
9:00-10:00am: Novel insights into the Genetic Basis of Heart Defects in Jacobsen Syndrome with Dr. Paul Grossfeld M.D., UCSD, RCHSD
10:00-10:45am: The Clinical and Genetic Diagnosis of Jacobsen Syndrome with Teresa Mattina M.D., Catania, Italy (Presenting Virtually)
11:00am-11:30am: Paris-Trousseau Syndrome- Bleeding considerations
11:30am-12:15pm: Lunch break for kids in children’s program

Please pick up your children and get them lunch so they can check back into childcare before our adult lunch and learn)

12:30-1:30pm: Lunch and Learn- Parents of adults with 11q disorders Panel with Jeremy Pyle, Amity Woodford, Kurt Christensen, Jacque Martin, Doug Clark, and Dawn Carzoli
1:30-2:15pm: Lifelong Educational Opportunities with DeAnna Pursai and Kaleaha Maldonado, College of Adaptive Arts
2:15-3:00pm: Caregivers: The Fine Art of Pretending You’ve got This/ Guided meditation with Linzee Carroll and Abbie Wertheim
3:00-3:45pm: Parent Led Break-out Sessions

Option 1: Birth to age 6 (Led by Kassi Smallwood)
Option 2: Ages 7-15 (Led by Joy Robertson)
Option 3: Older teens and adults (16 and older) (Led by Annette Maldonado)
Option 4: Adults with 11q disorders (this session is specifically for adults with 11q disorders to connect on their own or with the help of a caregiver)

3:45-4:30pm: Parent Led Break-out Sessions

Option 1: Planning ahead for the future: Financial planning, wills, and trusts (Led by Curtis and Linzee Carroll)
Option 2: Behavioral issues (Led by Jessica Fekete)
Option 3: Helping my child build and maintain friendships (Led by Stephanie Christensen)
Option 4: Grandparenting and extended family support- Finding Joy in your role (Led by Amy Ziegler and Janene and Dwayne Bartels)

7:30pm: Indianapolis Fever Game!

Gainbridge Field House,125 South Pennsylvania Street

Thursday, July 16

8:15-9:00am: Sibling Group Meeting
9:00-9:45am: Behavior: The Secret Language We Didn’t Know We Had to Learn with Jessica Fekete, Behavioral Therapist and 11q mom
9:45-10:30am: Mediocre Mom’s Guide to Raising a Child with a Disability with Stephanie Meredith MA, DrPH, The Genetic Support Foundation
10:30-11:15am: Glass Children: Spotlight on Siblings with Jessica Fekete, Sibling workshop facilitator
11:15-11:45am: 11q Research and Resource Group Business meeting
1:00-3:00pm: Family Picnic: White River State Park, Waterfront Pavilion

Please park at the Zoo

3:00-7:00pm: Evening at the Zoo!

Conference Agenda: Quick Print

Get to Know our Speakers: 2026 Speaker Biographies

Calendario de conferencias

2026 11q Research
and Resource Group Conference

We hope to see you July 13-16, 2026 in Indianapolis!!

We are pleased to share details about the 11q Research and Resource Group Family Conference, which will take place July 13–16, 2026, at the Sheraton Indianapolis City Centre Hotel in Indianapolis, Indiana!!

For returning families, the conference will follow a format similar to previous years. We will begin on Monday morning with an early-bird session geared toward families with a new diagnosis, though all attendees are welcome. The official conference will begin with a family luncheon followed by a keynote speaker. Programming will continue with speakers and breakout sessions throughout the day on Tuesday and Wednesday, and a half day on Thursday. In addition, we will host an adult reception, a family picnic, and are exploring the possibility of an off-site family activity. More details on these events will be shared as plans are finalized.

Conference Registration fees are as follows:

Adults: $125 per person
Children under 16: $65 per person
Individuals with an 11q disorder: No charge

Registration includes 4 days of conference sessions and activities, sibling workshops, family luncheon, family picnic, and one conference t-shirt per registrant.

Childcare

Childcare will be available during the conference for a fee of $50 per child. Advance registration is required to ensure adequate staffing. This fee covers childcare during daytime conference sessions throughout the week, as well as during the adult reception. The children’s program is available for children ages 18 months to 12 years, with no age limit for individuals with an 11q disorder.

Sibling Workshop

We are also pleased to offer a sibling workshop again this year. The workshop will meet each morning of the conference and is designed for siblings ages 7–14, providing opportunities to connect, share experiences, and build friendships with others who have a sibling with an 11q disorder. The sibling workshop is offered at no cost, but advance registration is required to allow for appropriate planning of activities and materials.

Discounted Room Rates:

We have secured a discounted group rate of $159 per night (approximately $187 per night including taxes) at the conference hotel. This rate is available for the three official conference nights (July 13, 14, and 15), with a limited number of rooms also available at the same rate for a few nights before and after the conference. Rooms may be reserved directly here. If you experience any difficulty booking through the link, please contact the hotel directly at (317) 635-2000.

Grants and Scholarships

As in the past, we are offering a limited number of partnership grants and scholarships to help families that would not be able to attend otherwise. You can submit an application for assistance here.

We anticipate a meaningful and enriching week filled with learning, connection, and family time, and we look forward to reconnecting with familiar faces and welcoming new families.

2026 11q Research and Resource Group Conference

Conference Registration

2026 11q Research
and Resource Group Conference