Meetings & Outreach
The Bank is very active in maintaining an ever growing and vital dialog with medical researchers, health care professionals, support groups, families and individuals. Emails, web sites, phone calls, and brochures are great ways we can stay in touch with those we serve. Scientific meetings and meetings of support groups are especially valuable to us. They offer us the opportunity to meet and greet face to face many of our tissue donor registrant families and medical researchers. Also, many learn about us for the first time at these meetings. There we can assist without delay with information about our tissue repository and tissue donation.
INTERNATIONAL MEETING FOR AUTISM RESEARCH (IMFAR)
May 17-19, 2012
Ron Zielke attended the IMFAR meeting and represented the NICHD Brain and Tissue Bank. A well attended session dealt with research using post-mortem tissue. Most of the researchers in this session were recipients of autism and control tissue from the Bank and demonstrated the unique usefulness of post-mortem tissue for studies on receptor structure, cellular organization, glial cell function and oxidative stress.
The meeting offered Dr. Zielke the opportunity to discuss both the availability of autism tissue for research, as well as to stress the need for any professional who interacts with autistic families to discuss potential tissue donation when the issue of autism research is discussed.
Several clinicians and autism support group organizers welcomed written material for inclusion in their office or web site.
United Leukodystrophy Foundation
July 15-16, 2011
Anthony Weldon attended this ULF meeting and gave a brief presentation to the international community of researchers about the availability of tissue donated by families with various types of Leukodystrophy. Subsequently Anthony discussed the importance of planning for tissue donation to families attending a session on End of Life Issues. The Brain and Tissue Bank staff joins the worldwide Leukodystrophy community in remembrance of T. Ron Brazeal, executive director of the ULF Foundation who died August 26, 2011.
10th Annual International Meeting for Autism Research (IMFAR)
May 12- 14, 2011
Ron Zielke represented the NICHD Brain and Tissue Bank at the IMFAR Meeting.
A highlight of the meeting was a presentation by Eric Courchesne on “The Developmental Neurobiology of Autism: The First Steps and the Road Ahead.” The presentation focused on the mechanisms underlying the occurrence of an enlarged brain in many autistic children. Most of the detailed post-mortem studies utilized tissue from the NICHD Brain and Tissue Bank.
Breathtaking three dimensional reconstructions of the autistic brain by Eric’s post-doctoral fellow Rich Stoner showed focal disruptions of distinct layers in the autistic brain. Eric made the provocative suggestion that a focus on autistic individuals after the teenage years may lead to the development of means of enhancing the rate at which the enlarged brain remodels to form a near normal brain and thereby reverse some of the symptoms of autism.
The meeting was attended by over 1800 clinicians, researchers and families. A special session honored individuals who made seminal efforts in ensuring sound biological research in autism: Margaret Bauman, Bernard Rimland, Portia Iverson, Eric London, Karen London, and Jon Shestak. Ron Zielke provided an update of the contribution of the NICHD Rain and Tissue Bank to autism research at a Special Interest Group session on “Postmorten Brain Tissue Research in Autism”.
Autism Research Institute Conference
April 27 – May 1, 2011
The NICHD Brain and Tissue Bank for Developmental Disorders participated in the 2011 Spring Autism Research Institute’s conference. Anthony Weldon, Jr., Project Coordinator, represented the Brain and Tissue Bank at the exhibition hall. He interacted with conference attendees including parents & caregivers, scientists & researchers, and practitioners. Several attendees that visited the Brain and Tissue bank booth showed much interest in future tissue donation and spreading the positive message of donation to their communities. There were a few parents who were pleasantly surprised that a bank existed and is aiding in the research to treat autism. Overall, representation at the conference was well received by all, especially those who were intrigued by the Brain and Tissue bank’s colorful foam “brains”.
American Academy of Forensic Sciences
February 22-25, 2011
Drs. Ron Zielke and Ling Li attended the American Association of Forensic Sciences Meeting, February 22 - 25, 2011, in Chicago, IL. The meeting was attended by thousands of individuals involved in every aspect of scene and evidence investigations at the time of death. Hundreds of medical examiners and coroners were in attendance. Drs. Zielke and Li consulted with medical examiners and coroners that had previously committed to assisting the NICHD Bank in the identification of potential tissue donors and assisting in obtaining consent for tissue donation. Additional medical examiners volunteered to assist in this effort. Other medical examiners and related professionals received information summarizing the contribution of the NICHD Bank to research worldwide and description of the Bank's outreach efforts.
November 3-5, 2010
Ron Zielke attended this international meeting sponsored by the Geneva Autism Centre of Toronto. Over 1900 attendees consisting of families, care providers and teachers attended 3 days of meetings addressing the needs of individuals with autism spectrum disorders (ASD). A poster presentation by H. R. Zielke and K. A. Currey described the “Autism Research: Contributions of the NICHD Brain and Tissue Bank for Developmental Disorders.” In addition, information and literature about the importance of tissue donation were provided to visitors at an informational booth. A special feature at the meeting was an art exhibition by over 20 artists with ASD, including artist Kaitrin Beechey. (Shown right “Sailing,” by Kaitrin Beechey - Used with permission.)
Defeat Autism Now (DAN)
Long Beach, CA
October 7 - 10, 2010
Melissa Davis manned a booth at the meeting to talk to family members about the importance of tissue donation for research on Autism Spectrum Disorders (ASD). Literature was distributed describing the NICHD Brain and Tissue Bank as well as brochures for pre-registration of families as a potential future tissue donor. The Bank encourages people with ASD as well as unaffected family members to plan ahead by pre-registration or filing the paper work in a safe place in case the situation arises where a family member dies.
National Association of Medical Examiners Meeting
October 1-4, 2010
Ron Zielke represented the Bank at this meeting. It is an important opportunity for the Bank to obtain the cooperation of medical examiners throughout the US in the referral of individuals with developmental disorders, especially autism spectrum disorders. Medical examiners are virtually the only source of control tissue for research.
International Association of Coroner's & Medical Examiners
Las Vegas, NV
July 11-14, 2010
Over 140 medical examiners and coroners from around the country attended the meeting. Kim Moraniec (pictured right) and Melissa Davis (pictured left) represented the Bank at our booth. A number of attendees were very interested in our program and agreed to refer donors to us. When medical examiners and coroners work with the Bank, their calls and emails to the Bank are answered by Melissa and Kim who can assist them.
Autism Society of America
July 7-10, 2010
Melissa Davis represented the Bank at our booth at the Autism Society of American meeting in Dallas which was attended by several thousand families and professionals. Hundreds of families and professionals visited the booth. The Autism Society of America prides itself for having the largest exhibit hall for the autism community.
Mitochondrial Medicine 2010
June 16-19, 2010
Melissa Davis operated our booth at the Mitchondrial Medicine Meeting which was attended by several hundred researchers and families. A number of researchers were interested in obtaining tissue from the Bank. Melissa answered questions on how researchers can obtain tissue as well as the availability of tissue. Many families stopped by the booth. Literature was distributed describing the NICHD Brain and Tissue Bank and the registration process.
International Meeting for Autism Research (IMFAR)
May 20-22, 2010
Ron Zielke attended the IMFAR meeting which is the world's largest meeting on autism research. The international audience of some 1700 included families, advocacy groups, and researchers from many different countries throughout the world. The Bank featured prominently in the presentations at the meeting. Eleven of the presentations were based on tissue which had been donated to the NICHD Brain and Tissue Bank and distributed to researcher.
Defeat Autism Now (DAN)
April 8-11, 2010
Melissa Davis (pictured right) and Ron Zielke (pictured left) manned a booth at the meeting to talk to family members about the important of tissue donation for research on Autism Spectrum Disorders (ASD). Literature was distributed describing the NICHD Brain and Tissue Bank as well as brochures for pre-registration of families as potential future tissue donors. In between these times, they listened to lectures on the most recent findings in ASD research and treatment. The Bank encourages people with ASD as well as unaffected family members to plan ahead by pre-registration or filing the paperwork in a safe place for the future.
Meeting with Medical Examiners - Sudden Unexpected Death in Infancy
March 17, 2010
Ron Zielke met with medicals examiners from four jurisdictions and a representative of a SUDI support group to discuss the establishment of a program to enhance tissue donation from infants who die suddenly and unexpectedly. The medical examiners expressed interest in enhancing tissue donations.
American Association for Forensic Sciences
February 23-26, 2010
This is a large meeting of physicians and scientist who are working in every aspect of Forensic Science including a large number of medical examiners. Ling Li (pictured) and Ron Zielke represented the Bank. Consider autism. Autism is not life threatening. Deaths amongst those with autism, especially children, occur from accidents. In the vast majority of cases, these deaths are investigated by medical examiners and coroners who are the initial contact people whereby they can discuss with loved ones the possibility of tissue donation for research. The NICHD Bank is working with medical examiners and coroners to encourage them to broach the subject about tissue donation for research with family members. If the family is willing to discuss tissue donation, the Bank contacts the family and obtains consent. A tragic accidental death may make it possible for researchers to more fully understand and possibly cure autism. Currently, 25 medical examiners ranging from Florida, Georgia, New Jersey, Maryland, Michigan, Minnesota, Texas, Colorado to Hawaii have agreed to refer potential tissue donors to the NICHD Bank.
Society for Neuroscience
October 17-21, 2009
Over 25,000 national and international scientists attend the largest meeting of its kind to hear about the latest research and meet with fellow scientists to discuss new research ideas. Exhibits by vendors and non-profit groups, such as the NICHD Brain and Tissue Bank for Development Disorders, provide information on what new scientific equipment and research approaches are available. Representatives of the NICHD Bank meet and inform scientists about the availability of tissue from over 400 disorders and discuss the specific tissue requirements for their research. Ron Zielke, John Cottrell (pictured right) and Robert Johnson (pictured left) represented the NICHD Bank at this meeting. It is an excellent chance for us to actually see new research findings that have been made possible due to the generous tissue donations by families throughout North America and the world.