CEO Report - TS Alliance



CEO DASHBOARD

October 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

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

October 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 Rare Diseases and Orphan Product Breakthrough Summit in Washington, DC on October 16. Earlier that day, the CSO, DCPTCL, and SPEC attended the DC Area Regional Meeting of the Health Research Alliance at the Howard Hughes Medical Institute in Chevy Chase, MD. The MRGA attended the BIO Patient Health and Advocacy Summit October 25-26.

On October 18, the CEO and CSO attended the TSC Clinical Research Consortium meeting in Rosemont, IL. At the meeting, the PIs of the TSC Clinical Research Consortium discussed strategies for sustaining the consortium in terms of both funding and teamwork. One outcome was the development of working groups to coordinate planning and funding applications to carry out clinical studies. Topics discussed for working groups were epilepsy surgery, pulmonary, healthcare quality and delivery, genetics, and renal.

The CSO invited three candidates for the new Director of Preclinical Research position for in-person interviews, ultimately selecting Dean Aguiar, PhD, to begin working November 26.

The DCPTCL attended the Northern California Step Forward to Cure TSC walk in San Leandro on October 27, where she provided information about clinical trials in TSC.

The CEO and CSO attended a meeting on October 29 with the Conafay Group to discuss opportunities to work together to raise significant funding for TSC research through private and Federal sources.

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 & Julie Matsumoto, MD (University of Virginia Charlottesville);

• Wynne Bird, BSN, RN, CPN (Children’s Hospital Colorado);

• Nicholas Blondin, MD (Associated Neurologists of Southern Connecticut);

• David Ewalt, MD (Dallas, TX);

• Bruce Korf, MD, PhD (UAB);

• Darcy Krueger, MD, PhD (CCHMC);

• Adelaide Hebert, MD and Hope Northrup, MD (UT Health Science Center Houston);

• Elahna Paul, MD, PhD (MGH);

• Brenda Porter, MD, PhD (Lucille Packard Children’s Hospital, Stanford);

• Ashley Pounders, MSN, FNP-BC (LeBonheur Children’s, Memphis);

• Jonathan Roth, MD (Dana Children’s Hospital, Tel Aviv);

• Steven Sparagana, MD (Texas Scottish Rite Hospital);

• Joyce Teng, MD, PhD (Stanford);

• Elizabeth Thiele, MD, PhD (MGH);

• Oded Volovelsky MD PhD (Hadassah Medical Center, Jerusalem);

• James Wheless, MD (LeBonheur Children’s, Memphis); and

• Howard Weiner, MD (Texas Children’s Hospital, Houston).

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

There was an increase in the number of constituent contacts in October from 319 in the previous month to 364. The percentage of education-related calls decreased from 80% to 72% this month. Of the 364 contacts, ................
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