2024 11q Research
and Resource Group Conference

We hope to see you June 24-27, 2024 in Carlsbad, CA!!

We are so excited to announce details for the 2024 11q Research and Resource Group Conference. The conference will be held June 24-27, 2024 at the Holiday Inn Carlsbad and we will have a discounted room block there as well as at the sister property, right next door, Staybridge Suites.

The conference will start out on Monday June 24th with a welcome luncheon and keynote speaker. We will have a variety of speakers each day including medical professionals, researchers, behaviorists, parents, etc. We will also have several parent-led break out discussion group sessions where parents can connect and learn from each other.

As in the past, we will offer childcare through our children’s program for a small fee. Individuals with 11q disorders are welcome to register regardless of their age and typically developing siblings ages 1-11 are welcome to register and participate also.

We will be offering a sibling workshop in conjunction with the conference. Siblings ages 7 and older are welcome to register for that workshop and the sibling workshop is free to attend. The sibling group will meet a couple of times during the week and have the opportunities to discuss their experiences being a sibling of an individual with 11q disorders.

We will end the official conference with a family picnic on Thursday afternoon, the 27th.

We are excited to announce that we will also have an optional family day at Legoland on Friday, June 28th. Legoland is just 5 minutes from the hotel. Please let us know if you are interested in attending the family day at Legoland so that we can apply for a specific number of group rate tickets.

The Holiday Inn hotel block and the Staybridge Suites hotel block are now open and available for booking!

The Holiday Inn is offering a discounted rate of $219 (King) and $229 (2 Queens) per night, without free continental breakfast.
The Staybridge Suites is $239 (Studio-King) $249 (King) and $259 (Double Queen), with free continental breakfast. The Staybridge Suites also have kitchenettes in each room, which we thought might be nice for families.

Please note that neither hotel is able to offer the discounted rate for several days before and after so only the Sunday night before the conference and the Friday night after the conference will be included in this rate. Even with that, there are a limited number of shoulder days available. If you are interested in more days than the hotel is offering the discounted rate, you may need to call the hotel directly to arrange that rather than booking through the link. If you put extended dates (not in our block) in through our link, it will give you the standard rate for the whole time, rather than discounting the days of the conference.

Conference Agenda:

Monday, June 24
10:00-11:30am:

Registration/Check-in/Work on Poster
11:00-11:45am:

Sibling Workshop- Meet and check in near registration table
12:00-1:30pm:

Family Luncheon/Welcome and Announcements/Family Introductions-Poster Session
1:30-1:45pm:

Childcare check-in
1:45-1:50pm:

Welcoming statement, Congressman Mike Levin (Salome Tosh, Mike Levin staff member, Oceanside)
2:00-2:15pm:

Website/Medical articles overview, Elena Chavez

2:15-3:00 pm:

Keynote Speakers, Cara and Claire DeCamp

3:00-3:30pm:

26 years of Jacobsen Syndrome Research, Dr. Paul Grossfeld M.D., UCSD, RCHSD
6:40pm:

San Diego Padres Game!!

The San Diego Padres have very generously gifted us tickets, but each family will be responsible for transportation to and from the game as well as parking if applicable.

Tuesday, June 25
8:15-9:00am:

Sibling Workshop- Boardroom Holiday Inn
9:00-10:15am:

Immunology Issues in Jacobsen Syndrome, Virgil Dalm M.D. PhD, Erasmus MC, The Netherlands
10:30-11:15am:

Coming to terms and coping with a new diagnosis, Ryan Sey. M.Div, Chaplain, Rady Children’s Hospital
11:15-12:15pm:

The Special Needs Family: A Whole Family Approach, Jessica Fekete and Linzee Carroll
12:15-1:15pm:

Lunch Break (Pizza by the pool)

1:30-2:30pm:

Why Does My Child Do That? Practical Strategies for Parents to Address Behavioral Issues at Home, Jessica Fekete, Behavioral Therapist and Mother to a child with Jacobsen Syndrome
2:30-3:30pm:

Panel Discussion, Adults with 11q disorders—the real experts!
3:30-4:15pm:

Parent Led Break-out sessions
Option 1: Inclusion, involvement and creating opportunities for your child
Option 2: Behavior Issues
Option 3: Adulthood living/care options
Option 4: Adults with 11q disorder (specifically for adults with 11q disorders to connect on their own or with the help of a caregiver)
4:15-5:00pm:

Parent Led Break-out sessions
Option 1:Birth- age 4
Option2: Ages 5-15
Option 3: Older teens and adults (16 and up)
7:00-9:00pm:

Adult Reception with variety of Hors d’oeuvres and cash bar

Childcare available

Wednesday, June 26th
8:15-9:00am:

Sibling Workshop
8:30-9:30am:

Novel insights into the genetic basis of heart defects in Jacobsen syndrome, Dr. Paul Grossfeld M.D., UCSD, RCHSD
9:30-10:30am:

The clinical and genetic diagnosis of Jacobsen syndrome: how to deal with it, Teresa Mattina M.D., Catania, Italy
10:30-11:30am:

Treating behavioral/mental health conditions in individuals with 11q disorders- Yi Hui Liu, MD, Developmental-Behavioral Pediatrician, UCSD
11:45am-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
12:15-1:15pm:

Lunch and Learn- Neurological issues in 11q disorders/understanding MRI findings, Jeffery Gold, MD, PhD, Rady Children’s Hospital
1:15-2:15pm:

Grief and Dealing with Loss of a Loved One with an 11q disorder- Panel Discussion Facilitated by Ryan Sey. M.Div, Chaplain, Rady Children’s Hospital
2:15-3:00pm:

Parent Led Break-out sessions
Option 1: Helping your child understand and deal with the loss of a loved one
Option 2: Advocating for your child’s education
Option 3: Managing a Rare Diagnosis
3:00-3:45pm:

Parent Led Break-out sessions

Option 1: Behavior issues
Option 2: Financial planning

Option 3: Grandparenting
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)
4:00-5:00pm:

Presentation on 11q Duplications -Dr. Teresa Mattina M.D., Catania Italy

Thursday, June 27th
8:15-9:00am:

Sibling Group Meeting
9:00am-10:15am:

Music Therapy and Special Needs -Kevin Alvarez, MA, MT-BC, Music Therapist, MusicWorx Inc.
10:30-11:30am:

Managing Bleeding Issues in Jacobsen Syndrome -Michelle Lambert, MD MSTR, Children’s Hospital of Philadelphia (Recorded presentation)
11:30-12:00pm:

11q Research and Resource Group Business meeting
12:30-3:00pm

Family Picnic- Hotel Courtyard!