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Dateline BTB - Archive

November 2013 – John Cottrell, Rob Johnson and Ron Zielke attended the Society for Neuroscience meeting in San Diego. This is a unique opportunity to meet with new researchers as well as with researchers who have used tissue from the Bank. As usual, about 10 researchers who have used tissue from the Bank gave us an update on their work, and requested more tissue. It gives us satisfaction that so many researchers of developmental disorders have come to rely on the Bank as a source of tissue to form the foundation of a significant part of their research. This meeting gives us the opportunity to inform the 25,000 neuroscientists about availability of human brain and systemic tissue. Even the researchers who use animal models understand that their findings will have to be verified in human tissue for their research to have human relevance. Rudy Castellani and Ron Zielke presented 2 posters on the analysis of 254 brain donors to the Bank for their ApoE genotype who are classified as normal controls based on findings at the time of their death. Nine individuals had the ApoE 4/4 allele, making them very susceptible to developing Alzheimer Disease if they had lived a normal life span. Immediately after the meeting we received inquiry from 3 researchers about the availability of tissue from these cases. This cohort of cases should provide an important resource for Alzheimer research. The range of interest of researchers was quite broad, with emphasis on Autism Spectrum Disorder tissue which is available from the Bank in the both the formalin fixed and frozen format.

October 2013 – Ron Zielke and Deanna Wilson attended the meeting of the National Association of Medical Examiners in Milwaukee, Wisconsin. Medical examiners are critical to the recovery of tissue from individuals with Autism Spectrum Disorder (ASD) since accidents are a frequent cause of death of children with ASD. The booth, display and written material stressed this point and was used to obtain the support from multiple medical examiners throughout the US. The Bank also received prominent recognition during two of the presentations to the attendees. Dr. David Fowler discussed the NICHD Bank during his presentation entitled “Partnerships Between Medical Examiners and Brain and Tissue Repository Directors: The Value and the Process of Establishing a Long Term Relationship with a Tissue Bank” while Dr. Bruce Hyma discussed the critical role of the NICHD Bank in a Sudden Unexpected Infant and Toddler Project in southern Florida.

August 2013 - Deanna Wilson, Project Coordinator, met with the staff of 3 chief medical examiners in Colorado. She presented a Powerpoint presentation on the NICHD BTB that highlighted its achievements and current need for young control donors to match the various young individuals with disorders that have been donated to the Bank. Deanna also stressed that the offices of medical examiners are the ideal site for identifying potential donors with Autism Spectrum Disorders. All 3 offices recognized the important potential role they have in medical research.

August 2013 - Anthony Weldon attended the 14th annual International Share & Care Cockayne Syndrome Network conference. The meeting was held in Washington, DC August 1 through August 4, 2013. Anthony presented information on the bank’s outreach, registration process, and tissue recovery process. The families that Anthony met were very receptive to the information provided. Two families in attendance gave testimony of how well the process worked when their child died and they donated tissue for research, and how grateful they felt after ensuring that other families would benefit from their loved one’s donation.

July 2012: NICHD BTB WORKSHOP - The NICHD Brain and Tissue Bank sponsored a Research Workshop July 16-17, 2012 in Rockville, MD entitled: “Contributions of Post-Mortem Tissue to the Study of Developmental Disorders – 20th Anniversary of the NICHD Brain and Tissue Bank for Developmental Disorders”

Researchers presented data on the rapidly changing gene expression during the first few years of life, on multiple studies on the Autism Spectrum Disorders, and additional studies on Down Syndrome, mitochondrial disorders, X-linked adrenoleukodystrophy, and hereditary DNA repair disorders. More information is provided at the links below:

July 2013 - Anthony Weldon attended the 40th Annual Educational Conference of the Florida Association of Medical Examiners on July 10 through July 12, 2013 (FAME 2013). The conference was held in Sarasota, FL. In an effort to expand the SUITD (Sudden Unexpected Infant and Toddler Death) Tissue Consortium project in conjunction with the American SIDS Institute, Anthony met with officials from various Florida state county medical examiners’ offices to discuss project goals and achievements. Co-Directors Dr. Betty McEntire, Executive Director of the American SIDS Institute and Dr. Bruce Hyma, District 11 Chief Medical Examiner were also available to present project updates.

May 2013 – The IMFAR meeting in Donostia-San Sebastian, Spain was attended by nearly 2000 participants from around the world. Researchers at the meeting presented the latest findings related to Autism Spectrum Disorders (ASD). All areas of ASD related research were discussed including the complex phenotypic expression of ASD, intervention protocols, learning, genetics, physiology and pathology. ASD tissue from the NICHD Brain and Tissue Bank for Developmental Disorders continues to provide the basis of multiple research studies. Eight presentations by researchers from three continents relied on tissue from the NICHD BTB. These studies involved gene analysis, GABA receptors, neuron maturation, and mitochondrial biochemistry. Several researchers expressed an interest in obtaining human post-mortem tissue, including researchers using mouse models who wished to verify their findings in human tissue. Ron Zielke also discussed the issue of tissue banking with support group leaders and answered questions of family members with ASD. Although the NICHD BTB has a significant number of ASD brain donations in its inventory, the studies presented indicate the importance of increasing the number of donations, especially from children and individuals with ASD of any age who are less severely affected.

February 2013 – The meeting of the American Academy for Forensic Sciences offered the opportunity for the Bank to recruit medical examiners to assist the Bank in identifying individuals with autism spectrum disorders (ASD) and normal children who are so vital to research on identifying the underlying mechanism of ASD. Ten medical examiners agreed to inform the Bank of cases of interest so that the Bank could contact the family for consent. A significant number of additional attendees visited the booth and talked with the staff about brain and tissue donation. The meeting was attended by Deanna Wilson, Ling Li and Ron Zielke.

November 2012 – The Neuroscience meeting in New Orleans is an opportunity to meet with researchers who have received tissue from the Bank in the past as well as to continue to inform neuroscientists of the availability of human tissue for research. The Bank was represented by John Cottrell, Robert Johnson and Ron Zielke.

Fall 2012 – Two publications based on human tissue received from the NICHD BTB were honored by serving as the cover article of two outstanding journals.

October 2012 – The Bank was represented with a booth at the National Association of Medical Examiners meeting in Baltimore Maryland by members of the Bank staff. This is a critical means of inviting medical examiners to participate in the collection of donors that are vital to advancing research in critical research such a autism spectrum disorders (ASD) and other pediatric disorders.

Summer 2012 - H. Ronald Zielke, Ph.D., Director of the NICHD Brain and Tissue Bank for Developmental Disorders, was recently quoted in several news publications.

July 2012 – The NICHD Brain and Tissue Bank was represented at the Florida Association of Medical Examiners (FAME)” and provided information on ongoing studies in Florida on Sudden Unexpected Infant Death and Autism Spectrum Disorders.

July 2012 – The NICHD Brain and Tissue Bank, with the additional support by the Department of Pediatrics at the University of Maryland School of Medicine, hosted a workshop at NIH on “Contributions of Post-Mortem Tissue to the Study of Developmental Disorders.” See detailed information on the home page.

May 2012 – Ron Zielke attended the International Meeting for Autism Research (IMFAR) in Toronto and provided information to both researchers and families with Autism Spectrum Disorder. Presentations of studies utilizing post-mortem tissue reinforced the important contributions made by the generosity of families who have donated tissue at the time of death. Discussions also continued on the importance of proper phenotyping of ASD cases.

May 2012 – Ron Zielke attended a meeting at NIH to participate in a discussion on “Brain and Tissue Banking Through a Federated Model”. Post-mortem tissue has become critical to the understanding of a wide range of medical disorders, however, the tissue is not available to researchers for a multiple of reasons such as: 1) the number of cases collected is insufficient to meet the needs of researchers, 2) researchers do not know of the availability or location of the tissue, 3) the tissue was not collected under standard conditions, 4) the demographic and clinical information attached to the tissue is not consistent between banks, 5) evaluation of the tissue quality is not standard. It is anticipated that a cooperative interactive system can be established for tissue banks funded by NIH that will overcome these difficulties and speed up medical research. This is a work in progress.

March 2012 - Ten scientists, pathologists, ethicists and government officials from Japan visited the NICHD Brain and Tissue Bank to discuss the formation and operation of a national tissue bank in Japan. Each member of the NICHD Brain and Tissue Bank made a presentation during the 6 hour meeting. Representatives of the IRB and the Medical Examiner’s office were present to discuss issues pertaining to protection of donor rights and the legal medical issues involved in the support of tissue donation through a government agency.

October 2011- The important work performed by the NICHD Brain and Tissue Bank was highlighted in a recent article by Alison Abbot in Nature, "Brain Child." The article focused on the need of donated brains from healthy children following accidental deaths for the study of autism spectrum disorders, schizophrenia, and many other disorders. Although the NICHD BTB has numerous brains from children, sometime critical areas of the brain needed for research have been depleted due to high demand by researchers. The need for additional pediatric brains was echoed by several other researchers who were interviewed. Most of these researchers are major recipients of tissue from the NICHD BTB. It is hoped that a joint effort may enhance tissue donation so that the children’s legacy may be a world free of dreaded diseases such as autism, schizophrenia, adrenoleukodystrophy, tuberous sclerosis and many others that afflict children and young adults.

August 2011 - Final protocols for the initiation of the Sudden Unexpected Death in Infancy (SUDI) Study in Florida were approved and implemented. To date several families have donated tissue during their time of grief to aid in the understanding of the tragic events that rob the family of the infants they loved.

03/11/2011 - The Blazeman Foundation for ALS consulted with Ron Zielke on their effort to enhance research on ALS (Amyotrophic Lateral Sclerosis) through tissue donation from individuals with ALS to the Bank. The foundation is named after Jonathan “Blazeman” Blais,  the only athlete with ALS to compete in the Ironman Triathlon in Kona, Hawaii. Jon managed to complete the race by rolling on the ground across the finish line. In so doing, he created what has become known as the “Blazeman Roll”. In honor of Jon, other athletes now use the “Blazeman Roll’ at the end of triathlon events. The Blazeman Foundation has the support of  fellow athletes from around the world in its goal to raise awareness of ALS and to support cutting edge research.

02/22/2011 - 02/25/2011 - Drs. Ling Li and Ron Zielke are attending the 63rd Annual Scientific Meeting of the American Academy of Forensic Sciences in Chicago, IL. The Bank works closely with medical examiners and coroners throughout the USA for tissue donations.

SUDI - Sudden Unexpected Death in Infancy - For over a year the Bank has been working with the American SIDS Institute in initiating a tissue donor program in Florida for the study of SUDI. The project is overseen by Dr. Kathleen Currey and requires specialized IRB approved consent forms and updated tissue sectioning protocols.

02-02-2011 - Drs. Elaine Shen and John Phillips of the Allen Institute for Brain Science visited the Bank and gave a presentation on the Allen Human Brain Atlas project at the Maryland OCME.  Currently, the atlas consists of more than 90 million data points from some 1500 sampled regions utililzing tissue from the NICHD BTB.  The NICHD BTB continues to work with the Allen Institute to provide tissue that meets the strict guidelines required of the project. The Allen Human Brain Atlas is an extraordinary endeavor to provide a comprehensive brain and genome map of the human brain. Learn more!.

February 2011 - Drs. Ling Li and Ron Zielke continue to provide extensive information on tissue banking, especially regarding seizure disorder cases already donated to the Bank, to a consortium of researchers who are participating in SUDEP research.

01-25-2011 - Our yearly letter and questionnaire have gone out to more than 200  researchers who have received tissue from us over the past 2 1/2 years. Please let us hear from you before the February 14th deadline. With the information you provide, we can update the ever growing list of more than 850 publications (papers and abstracts) utilizing tissue received from the NICHD BTB. You can fax or email your response.

12-02-2010 - Dr. Kathleen Currey presented "Spells, Spasms, Stare Offs, Fit and Falling Out - It's not always what it seems." at  Pediatric Grand Rounds at the University of Maryland. She discussed the basics of EEG interpretation and some of the common epilepsy syndromes. She also showed four cases with video accompanied by EEG tracings where the final diagnosis was different than the initial impression, thus demonstrating the significant usefulness of this technology to often clarify difficult problems.