CEO Report - TS Alliance



CEO DASHBOARD

November 2018

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YTD Financials vs. Budget and Prior Year

Source: TS Alliance General Ledger

Twelve Month Trailing Totals

Source: TS Alliance General Ledger and Audited Financial Statements

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TSC Biosample Repository

Source: Van Andel Research Institute

Constituent Peer-to-Peer Contacts

Source: Vice President of Support Services monthly reports (ARCs, CA, TSCCA, DATRC, EPM)

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Constituent Support Service Dept. Contacts

Source: Vice President of Support Services

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Educational Training Information Provided and School Meetings

Source: Vice President of Support Services monthly reports

CEO WRITTEN REPORT

November 2018

Accelerate scientific advancements by funding research; driving the growth of tools and consortiums that support basic, translational and clinical research; and advocating for federal or state research funding by partnering with government, industry sponsors and other patient organizations.

The CSO attended the Society for Neuroscience conference in San Diego November 3-6, where he met with current and potential industry partners for the preclinical consortium and saw posters and heard talks related to academic work the TS Alliance has funded. Some follow-up actions include connecting the group of organizations working on genetically-related autism disorders with the Critical Path Institute, which is involved with endpoint- and biomarker-consortia involving FDA, EMA, and industry partners. Such a consortium for autism could help enable more clinical trials and drug approvals in this area.

The SPC attended three meetings in November to exchange ideas about maximizing the impact of TS Alliance-funded grants to academic researchers. The Nonprofit Funder-Research Institution workshop in DC on November 7 was aimed at reducing administrative burdens in the grantmaking process. The Open Research Funders Group meeting on November focused on making the outputs of funded research openly available to the public as soon as possible. The Health Research Alliance meeting in Durham, NC November 15-16 featured discussions on how to measure the impact of grants on a given research field and on the career of a funded scientist.

At the end of every year, the TS Alliance scientific staff meet with the leaders of the NIH institutes that fund TSC research to align priorities and exchange updates on programming. The first visits began in mid-November. The CEO, CSO, and MRGA met with the Director of the National Center for Advancing Translational Sciences (NCATS) on November 16. On November 26, the CSO, DPR, and MRGA met with the Deputy Director of the National Institute of Diabetes and Digestive and Kidney Diseases and the Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

The CSO represented the Developmental Synaptopathies Consortium at the Rare Diseases Clinical Research Network meeting in Rockville, MD on November 20. Discussions included NCATS’s decision to limit a given RDCRN to three funding cycles, the sustainability of RDCRNs after NIH funding is not available, and efforts at the data management coordinating center to make RDCRN data more readily available and useful to non-RDCRN investigators.

The DCPTCL and Jessica Krefting, RN, BSN (University of Alabama at Birmingham) staffed an exhibit table at the American Academy of Pediatrics National Conference and Exhibition in Orlando, Florida, November 3-5 where general pediatricians, pediatric specialists, pediatric residents, and medical students from North America and around the world stopped by the TS Alliance table to receive the updated TSC diagnostic criteria and learn about infantile spasms and the PREVeNT trial. The traffic at the table was so high we plan to return to this meeting next year.

On November 28, the CSO, MRGA, Dr. Peter Crino, and Sean and Lauren Shillinger conducted a meeting along with University of Maryland Vice President of External Affairs Kristin Bryce and Philanthropist Gary Mangum with Maryland Budget Secretary Brinkley and his staff to discuss funding for the Tuberous Sclerosis Complex Center of Maryland. The goal was to get money included in the Governor’s budget in 2019.

The CSO, DPR, VPCS, SDDR, MDR, MRGA, and DCPTCL attended the Annual American Epilepsy Society Meeting in New Orleans, Nov 30-Dec 4 where activities included the TS Alliance’s Research Update and Reception (also broadcast via Facebook Live) and TSC special interest group (SIG) on Nov 30. As usual, many meetings were held with current and possible future partners.

The following PAB members and other healthcare professionals* volunteered time in one or more of the following ways: 1) peer-to-peer feedback to clinical questions, 2) feedback to questions from the TSC community, 3) guidance about TS Alliance print materials, and 4) TS Alliance calls and committee meetings:

• Derek Bauer, MD (University of Virginia, Charlottesville);

• Prof. Petrus DeVries (University of Capetown);

• Stephen Hammes, MD (University of Rochester);

• Jessica Krefting, RN, BSN (University of Alabama Birmingham);

• Michael Kohrman, MD (Akron Children’s Hospital);

• Darcy Krueger, MD, PhD (Cincinnati Children’s Hospital);

• Joel Moss, MD, PhD (NIH/NHLBI);

• Sanjay P. Prabhu MBBS, FRCR* (Boston Children’s);

• Joshua Samuels, MD, MPH (University of Texas Health Science Center, Houston);

• Elizabeth Thiele, MD, PhD (MGH); and

• James Wheless, MD (LeBonheur Children’s Hospital, Memphis).

Identify more individuals impacted by TSC and engage them through improved clinical and support services.

There was a decrease in the number of constituent contacts in November from 364 in the previous month to 298. The percentage of education-related calls decreased from 72% to 65% this month. Of the 298 contacts, ................
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