2009 - TSC Alliance

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Fiscal Year 2009 (July 1, 2008 – June 30, 2009)

Operating Board

FY2010 Board Committee Goals

TSC Alliance Board of Directors Meeting Minutes, June 19, 2008
TSC Alliance Board of Directors Meeting Minutes, Oct. 17-18, 2008
TSC Alliance Board of Directors Meeting Minutes, Jan. 14, 2009
TSC Alliance Board of Directors Meeting Minutes, Feb. 26, 2009
TSC Alliance Board of Directors Meeting Minutes, June 10, 2009

Electronic Approved Board Votes

To approve the FY 10 Budget (Jackson, Parkes) (previously approved by the Finance and Executive Committees; approved 6/11/09))
To approve the Document Retention Policy (Parkes, Blum) (approved 6/11/09)
To approve the PAB (see list below) (Thurston, Jackson) (Heffron, Frost abstention) (approved 6/11/09)
Professional Advisory Board members up for reappointment that had been recommended by the Science and Medical Committee: Peter Black, MD, PhD; Harry Chugani, MD; Fran DiMario, MD; Nancy Elling, RN; David Franz, MD; Pat Gibson, MSW; John Hulbert, MD; Bryan King, MD; David Kwiatkowski, MD, PhD; Frank McCormack, MD; Steve Sparagana, MD; Howard Weiner, MD
To approve the SAB (see list below) (Parkes, Bolger) (Heffron abstention) (approved 6/11/09)
The Science and Medical Committee also recommended the reappointment of the following individuals to the International Scientific Advisory Board: Greg Holmes, MD; Sergiusz Jozwiak, MD, PhD; Cheryl Walker, PhD
to approve the minutes of the 2/26/09 meeting in Washington, DC. (approved 6/23/09)
to approve the TSC Alliance Board Committee Goals FY2010. (approved 6/23/09)

FY09 Board Schedule
Board Committee Assignments
FY09 Organization Schedule
Five Year Strategic Plan
Strategic Plan Worksheet for Feb. 26, 2009
Board of Directors’ Legal Responsibilities

CEO Reports

CEO Report, July-Sept. 2008
CEO Report, Oct.-Nov. 2008
CEO Report, Dec. 2008-Jan. 2009
CEO Report, Feb.-April 2009

FY09 Events Schedule/Budgets

Board Committees

Audit

Electronic Votes

To approve the FY10 audit proposal from Tate & Tryon and recommend Kari Carlson (CEO) sign engagement letter on behalf of the Audit Committee. (approved June 29, 2009)

Audit Committee Meeting Minutes, Feb. 17, 2009
Audit Committee Meeting Minutes, Feb. 26, 2009
Audit Committee Meeting Minutes, Mar. 10, 2009

TSC Alliance Operating 2007 Form 990 (for FY 2008)
Endowment Fund 2007 Form 990 (for FY 2008)
Form 199 Taxable Year 2007

FY 2008 Audit, Final

Communications

Communications Committee Meeting Minutes, Aug. 1, 2008
Communications Committee Meeting Minutes, Aug. 26, 2008
Communications Committee Meeting Minutes, Dec. 2, 2008
Communications Committee Meeting Minutes, April 30, 2009

FY2010 Matale Line Communications Plan/Proposal

TSC Alliance Manifesto
TSC Alliance “Stories” Ad Campaign
TSC Alliance “Ribbons” Ad Campaign

Endowment

Endowment Fund Board Meeting Minutes, Oct. 17, 2008
Endowment Fund Board Meeting Minutes, Feb. 26, 2009

Endowment Fund Portfolio Analysis, Sept. 30, 2008
Endowment Fund Portfolio Summary, Sept. 30, 2008
Endowment Fund Asset Allocation Review, Sept. 30, 2008
Endowment Fund Asset Allocation Review, Dec. 31, 2008
Endowment Fund Portfolio Summary, Feb. 25, 2009
Endowment Fund Asset Allocation, Feb. 25, 2009
Endowment Fund Portfolio Summary, May 6, 2009
Endowment Fund Portfolio Allocation, May 6, 2009

Endowment Fund Recommended Immediate Action Memo, May 7, 2009
Endowment Fund Proposed Portfolio Summary
Endowment Fund Proposed Portfolio Allocation

Pockets of Deflation (from Citi/Smith Barney)
On the Markets: Restoring Confidence (from Citi/Smith Barney)
An Easy Boat to Miss (from Citi/Smith Barney)
Economic Theme: Uncharted Territory: Not the Final Act (from UBS)
Economic Theme: Uncharted Territory: After the Senate Vote (from UBS)
Capital Markets Overview: First Quarter 2009 (from Citi/Smith Barney)
Equity Strategy (from Citi)
March 2009 Investment Outlook (from Citi/Smith Barney)
Global Investment Committee Special Bulletin (from Citi/Smith Barney)
GMO Article: Reinvesting When Terrified

American Funds Bond Fund of Amer A
American Funds US Government Sec A
BSV Fact Sheet
MBG Fact Sheet

Electronic Votes

to approve anticipated contribution of $130,319 by fiscal year end and to approve to be a “stop gap” for a future potential operating deficit ranging from $0 to $300,000 for just this fiscal year ending 6/2009. (approved unanimously 1/21/09 and 1/15/09)
to approve Michael Augustine as a member of the Endowment Fund Board as of 7/1/09. (11/27/08)
to approve Michael Thurston as a member of the Endowment Fund Board as of 12/1/08. (11/27/08)
to approve the sale of UBS Dynamic Alpha Fund. Invest proceeds into Growth Fund of America (Endowment Fund already voted and approved this action), reduce the money market balance from $1,957,750 to $457,750. The current money market yield is 0.45%, increase the fixed income allocation by $1,500,000 (approved via email 5/12/09):
–Invest $375,000 into the Bond Fund of America
–Invest $375,000 into the US Government Securities Fund
–Invest $375,000 into the BSV Vanguard Short Term Bond
–Invest $375,000 into the SPDR Barclay’s Capital Mortgage Backed Bond
to approve a revised pledge amount of $153,146.89, reflective of corrected actuals in the twelve calendar quarters. (approved 6/22/09)
to approve a revised pledge amount of $153,146.89, reflective of the corrected actuals in the twelve calendar quarters. (approved June 22, 2009)

Executive

Electronic Votes

to approve the 08 Audit Committee’s selection of Tate & Tryon as our 09 auditors (Approved 7.7.08) (Sherman abstained)
to exempt Ruth Carski retroactively from our Accounting Policy that states that all new employees be treated as hourly employees through their three-month probationary period. (Approved 7.8.08)
to approve the Science and Medical committee recommendation to spend up to $8,100 of Fast Track funds for a meeting to write a protocol for a clinical trial using an mTOR inhibitor for cognitive outcomes in individuals with TSC. (Approved 7.9.08)
to approve David Parkes to fill the final year of Millie Augustine’s board term (FYE 6.30.09). (Approved 7.13.08)
to approve Steven Goldstein to fill the final year of Michael Michael’s board term (FYE 6.30.09) and Henry Shapiro to fill the final year of Megan Lara’s board term (FYE 6.30.09). (Approved 7.22.08)
to approve an update of the signature cards on the Chase Bank account #000420004004123, and authorize the new signers Kari Luther Carlson and Terry Elling. (Approved 7.24.08)
to redirect Winifred Gordon Foundation grant ($15,000) to underwrite part time salary for JoAnne Nakagawa for FY09. (Approved 1/16/09)
to rescind the decision to ask for voluntary contributions to defray the costs associated
with our Board meeting as well as the March on the Hill. (Approved 1/19/09; one descending vote)
to approve Vicky Whittemore’s Memo of Understanding. (Approved 1/21/09)
to approve a Safe Harbor Match of 3% salary for employees during FY10 (approved May 15, 2009)
to approve Teri Hatcher as a member of the Corporate Advisory Board (approved February 3, 2009)
to approve the FY08 audit (approved March 12, 2009)
to approve Executive Committee meeting minutes from April 15, 2009 and May 21-22, 2009 and the Goals for FY2010 (approved May 28, 2009; Rob Thurston voted against the 4/15 minutes)
to approve Executive Committee meeting minutes of 10/8/08, 12/17/08, 1/7-8/09, and 2/18/09. (approved 6/4/09)
Martina Bebin (University of Alabama, Birmingham)- $8,000 for nurse coordinator salary support
Candy Brown (Oakland Children’s Hospital) – $1,750 for TSC Clinic related patient support programs
Robert Flamini (Atlanta, GA) – $8,000 for nurse coordinator salary support
Hope Northrup ( U. Texas Houston) – $8,000 for nurse coordinator salary support
Shelley Williams (Pittsburgh Children’s) – $1,750 for TSC Clinic related patient
to approve the TSC Alliance Executive Compensation and Reimbursement Policy (approved June 30, 2009)
to reinstate the former cash reserve policy and increase it to $500,000 as suggested in the May 22, 2009 Executive Board planning meeting (approved June 26, 2009)

May 21-22, 2009 Executive Committee Meeting Presentations

Funding Our Mission: Development Report
We’re Fighting for the Cure: President & CEO Report
Growing TSC Scientific Initiatives: Goals for FY10 & Beyond

Fiscal Year 2009 (July 1, 2008 – June 30, 2009)

Operating Board

CEO Reports

Board Committees

Audit

Communications

Endowment

Executive

Finance

Fund Development

Government Relations

Nominating & Governance

Outreach

Science & Medical

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