LuMind RDS Connects with Families and Researchers in Chicago

Categories: Blog, News, Other, Why Support Research?

Chicagoland Down Syndrome Research and Medical Care Conference & Trisomy 21 Research Society International Connect Families, Affiliates, and Researchers with a Shared Purpose

Chicago was the backdrop for two great conferences around the topic of Down syndrome research and medical care. LuMind RDS staff had the opportunity to engage with different members from the Down syndrome community and get to share with them our Four Scientific Research Categories and perspective on the importance of research.

We met families eager to learn more about the advances in medical care and research and researchers who have dedicated their professional careers to bringing medical advances to individuals with Down syndrome and developing a greater understanding of how Trisomy 21 affects their development from conception and throughout their lifetimes. At the end of an incredible week, we felt reassured that the LuMind RDS Four Scientific Research Categories are aligned with the current promising research. Our sole focus continues to be funding and developing groundbreaking research to meaningfully improve memory, cognition, and independence in individuals with Down syndrome.

Self-advocates, families and friends get more than they expected at the First Chicagoland Down Syndrome Research and Medical Care Conference

Dr. Parisi from NICHD

Global Down Syndrome Foundation and National Association for Down Syndrome co-organized a full day for self-advocates, families and friends in the Chicago Down syndrome community to get answers to some important questions below about research and medical care from leaders in the sector.

  1. What is the connection between Down syndrome and immune system disorders? Alzheimer’s Disease? Cancer?
  2. How can we improve health outcomes and lifespan for children and adults with
  3. Down syndrome through research and medical care?
  4. What’s are the latest findings and how can families help?

Approximately 45 parents and caregivers eagerly listened and engaged with featured speakers from the Linda Crnic Institute, LCSW experts in mental wellness and behavioral health for adults with Down syndrome, and the Intellectual Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Michelle Anderson, a self advocate and public speaker for the National Association for Down Syndrome (NADS) kicked off the meeting with a moving presentation about her experience living with Down syndrome.

Families also had the opportunity to contribute onsite to the The Linda Crnic Institute Human Trisome Project Biobank with their health profile and blood donation. LuMind RDS along with other affiliate organizations were there to help families connect directly with research or service organizations.

T21 Research Society Conference Reveals Researchers and Families Alike Have a Great Passion to Find Therapies to Improve or Reverse the Effects of Trisomy 21.

Marla Murasko with Marsha Scheitlin (DSO)

LuMind RDS recently had the opportunity to add Conference Sponsor to the Founding Sponsor status at the 2017 Trisomy 21 Research Society International Conference in Chicago. More than 200 researchers from Europe, South America, Canada, and the U.S. met to share the most recent findings of their research. The conference sessions were grouped by research focus and featured research presentations ranging from the most current investigations in genotype-to-phenotype relationship in Down syndrome, cancer in Down syndrome, breakthrough oral communication, to modeling human neurodevelopment and neural developmental disorders using human induced pluripotent stem cells and brain “organoids”. Marla Murasko, interim Executive Director and Hampus Hillerstrom, LuMind RDS Board Vice-Chair, were interacting with current and promising researchers in the field today. You couldn’t help but soak up the energy buzzing throughout the meeting as academic leaders, post docs and associates showcased their work, findings, and where the research was going next. So what did we learn?

Drs. Stephanie Sherman and Diana Bianchi
Drs. S. Sherman, D. Bianchi
1. There is amazing commitment from new and veteran generations of researchers to collaborate and create innovative therapies that help individuals with Down syndrome live a healthier and more independent and fulfilled life.

The Scientific Poster Session featuring the latest Down syndrome research encourages creative conversations among seasoned researchers and upcoming researchers in the field, like Drs. Stephanie Sherman and Dianna Bianchi pictured on the right. The spirit of collaboration and focus on producing the best results possible encourages investigators to compare lab techniques and corroborate results. These scientists challenge each other to consider known and unknown factors in their field of research studies.

 

2. The field of Down syndrome research is filled with promising research projects that have the potential for many treatment options throughout the pre- and post-natal development of individuals with Down syndrome.

There are exciting studies from investigators all over the world who are looking at the different effects of the over-expressed genes resulting from the third copy of chromosome 21. Some researchers are learning much more about the gene expression anomalies that sculpt the structural and metabolic alterations that define Down syndrome in both humans and animal models. Some of these discoveries are helping researchers test and identify potential drug targets to prevent the alterations or rescue the systems that have been altered. The conference featured 14 sessions, over 50 presentations and two poster sessions. This bi-annual meeting is a wonderful opportunity for LuMind RDS to see and interact with investigators, like Nadine Aziz below, who stopped by the LuMind RDS table to share their connection with Down syndrome.

 

3. Families and researchers agree that the needs and experience of individuals with Down syndrome is the top priority in clinical trials. These groups are ready to collaborate to accelerate the funding and development of groundbreaking research.

Individuals with Down syndrome and their families have a crucial role to accelerate research. To help improve medical care practice, research targets, and to truly advance understanding of the effects of Down syndrome, the extent to which families contribute to research by signing up for registries like DS-Connect, contributing to projects like The Linda Crnic Institute Human Trisome Project Biobank, or clinical trials like the 3 Star Trial definitely helps to garner even more support from larger public institutions and the biopharmaceutical organizations. The T21RS Science & Society Symposium chaired by Peter Paul De Deyn from Belgium, featured a lively panel discussion led by Dr. Diana Bianchi, Director of the NICHD, on the pros and cons of having a relative with Down syndrome participate in clinical trials. An improvement in the communication provided to families participating in these trials resonated in the comments from clinicians and families alike. Regardless of minor differences, it was clear that some families are frustrated with the progress and funding allocated to Down syndrome research, while others are concerned with the safety and experience of individuals who participate in trials and registries. Researchers eagerly listened to the families’ comments and questions, demonstrating that their voices are just as important as any other in order for the research to succeed. Nearly every family left this conference feeling reassured that much work is being done to drive this research from the lab to the clinician’s office.

For more info on T21RS, visit T21RS.org.