CEO Report



CEO DASHBOARD

August 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

August 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 CEO, CSO and PAB member Dr. Darcy Krueger attended a conference call with Lundbeck Regulatory Affairs officials on August 3 to discuss safety data gathered by the TSC Clinics to support a label change in an effort to improve vigabatrin access.

The CSO attended the Anti-Epileptogenesis and Disease Modification Workshop convened by NINDS on August 6 and 7. Followup will focus on publishing a call to action, including recommendations for researchers to work collaboratively (e.g., consortium) to develop and validate biomarkers similarly to the approach taken by the Alzheimer’s community and for the NIH to issue funding opportunities for such work.

The TS Alliance submitted a grant application to NIH for partial financial support of the 2019 International TSC Research Conference.

The following Professional Advisory Board members and other healthcare providers gave feedback to questions from constituents and peers:

• Anna Byars, PhD (CCHMC)

• Orrin Devinsky, MD (NYU Langone Medical Center)

• Tanjala Gipson, MD (LeBonheur Children’s Memphis)

• Stephen Hammes, MD* (Endocrinology Division Chief, University of Rochester)

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

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

• Patricia E. McGoldrick, NP MSN MPA (Mt. Sinai Health System, NYC)

• Joel Moss, MD, PhD (NIH/NHLBI)

• Ian Miller, MD (Nicklaus Children’s Hospital Miami)

• Katherine Van Poppel, MD (Levine Children’s Hospital, Charlotte NC)

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

The NHD Steering Committee members—Steven Sparagana, MD (Texas Scottish Rite Hospital, Dallas), Prof. Petrus de Vries (University of Cape Town) and Hope Northrup, MD (University of Texas Health Science Center Houston)—approved release of SEGA-related data from the NHD to neurosurgery fellow at Nicklaus Children’s Hospital.

TSC Clinic Committee members—Anna Jeong, MD (AbbVie, Chicago), E. Steve Roach, MD (Dell Medical School, Austin) and Tricia Bodnar (Clinic Ambassador at Texas Scottish Rite Hospital, Dallas)—reviewed new clinic applications from

1. Arpita Lakhotia, MD and Sushil Gupta, MD (University of Louisville)

2. Philippe Major, MD (CHU Sainte- Justine, University of Montreal)

3. Pradnya Gadgil, MBBS, MRCPCH (Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Mumbai)

4. Ana Beatriz Hinojosa-Amaya, MD and Marisol Ibarra-Ramirez, MD (Hospital Universitario Jose Eleuterio Gonzalez, Universidad Autonoma de Nuevo, Monterrey, Mexico)

Ashley Pounders, MSN, FNP-BC (LeBonheur Children’s), Wynne Bird, BSN, RN, CPN (Children’s Colorado) and the DCPTCL prepared a summary report of the inaugural nurse summit held in conjunction with the 2018 World TSC Conference, which will be published in the "Nursing Matters" section of Novartis's TSC In Depth Newsletter, which is circulated to healthcare providers around the country.

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 August from 469 in the previous month to 361. This large decrease was due to the 2018 World TSC Conference held in July. The percentage of education-related calls decreased from 79% to 66% this month. Of the 361 contacts, Fall: Tampa, Indiana and Fall>Spring: Houston); which is offset by +$27.5k that has been collected early for Fall walks starting in September.

B. Other Community Campaigns +$84,855 (+42%)

YTD unbudgeted revenue received from Facebook donations +$70k continues to outperform expectations; Team TSC has raised $59k to date ahead of budgeted revenue (currently @84% of goal); Other Community Campaigns represent $96k (74%) of funds raised to date with another $37k expected to be raised by the end of the year.

C. Major Events +$40,269 (+16%)

17th Annual Comedy for a Cure exceeded budget by +$65k with Art for a Cure income fell short of budget -$25k. The team is working on creative ways reduce the shortfall from this event by creating a revenue source with the artwork received during the contest.

YTD Special Events DBD Variance of $18,539 was driven by a savings that occurred with the 2018 walk shirts (+$14K). No year-end variance is currently being projected.

August saw the team in full gear as we prepared for the Fall Walk series to begin. We also had a working group call in August focused on how the TS Alliance can improve our walk program and what our refreshed look was going to be in 2019 and beyond. The team had our second 45th Anniversary Gala committee meeting to determine our honorees for the NY event, and we spent the month reaching out to the honorees to set expectations and receive agreement. All three honorees have accepted the honor: The Engels Family, Dr. Elizabeth Thiele and Greenwich Biosciences. We regrouped at the end of the month to set 2019 goals and objectives at our annual Staff Planning Session.

August Major Gifts (Source: Raiser’s Edge [reported on cash or in-kind gifts received])

|Name |Gift Amount |Gift Date |Gift Type |Fund ID |

|Novartis Pharmaceuticals Corporation |$149,544.00 |8/27/2018 |Cash |Natural History DB |

|Novartis Pharmaceuticals Corporation |$60,000.00 |8/14/2018 |Cash |TSCi GRANTS |

|The Louis Berkowitz Family Foundation, Inc. |$10,000.00 |8/14/2018 |Cash |ULC Grants |

|Kiran Somani |$6,110.00 |8/2/2018 |Cash |Dallas Walk FY18 |

|Depomed |$5,000.00 |8/28/2018 |Cash |World SponAdExh FY18 |

|Aeonian Pharmaceuticals |$4,900.00 |8/20/2018 |Cash |Preclinical Consortium |

|Vincent Cervantez |$2,500.00 |8/22/2018 |Cash |Team TSC FY18 |

|Noel Fox |$1,500.00 |8/28/2018 |Cash |New England FY18 |

|Scott Johnston |$1,074.00 |8/14/2018 |Cash |Indiana Walk FY18 |

|Teresa Brockwell |$1,000.00 |8/14/2018 |Cash |Oklahoma Walk FY18 |

|Chase Hudson |$1,000.00 |8/7/2018 |Cash |Team TSC FY18 |

|Linda Jackson |$1,000.00 |8/28/2018 |Cash |Florida Miami FY18 |

|Johnson & Johnson |$1,000.00 |8/8/2018 |Cash |Seattle Walk FY18 |

|Theresa M. Varnet |$1,000.00 |8/14/2018 |Cash |Major Donor |

|TOTAL |$245,628.00 |  |  |  |

Facilitate more interaction among the national and international TSC community to drive peer to peer support

In August there was total of 443 volunteer hours and 184 volunteer participants. There were 412 one-on-one support contacts between the Regional Program Managers and the TSC community. A training took place for the Education Parent Mentors on August 22. Picnics were held in Ohio, Pacific NW and Southern California with a combined attendance of 135 constituents. Northern California and NY/NJ hosted webinars that had a combined attendance of 50 constituents.

During August, the Adult Regional Coordinators supported 1,177 adults with TSC through phone, email, Facebook, and face-to-face (this number is not included in the total number of constituent contacts by Vice President of Support Services).

There were 161 parents/caregivers supported through the Dependent Adult Transitional Resource Coordinators (DATRCs) program in August.

Education Parent Mentors provided 36 families peer support. There was one training held for the Education Parent Mentors the month of August (How to Empower Parents). In August, six school meeting occurred in CT, CO, AL, PA (3), and seven school districts were provided the resource of the TS Alliance Educator Mentor Program.

Our membership on Inspire grew by 20 to 6,115 from 123 countries. There was one new journal entry and 200 replies to previous journals in August. There were 46 new discussions and 40 replies. The top three posts were:

• “Angiofibriomas” posted by an adult with TSC asking if anyone knew about treatments for angiofibromas and where they could get it.

• “Rapamicyn” posted by a mother seeking information on topical rapamycin for her son and where she could get it inexpensively and inquiring about laser treatment.

• “Homeschool special needs teacher” posted by a parent seeking guidance on special needs homeschooling assistance.

For specific data on additional peer-to-peer support programs, educational advocacy, or social media presence please see the chart below.

Constituent Outreach Statistics (Sources: Vice President of Support Services, Community Outreach Manager, Inspire web statistics, FaceBook, Twitter, Raiser’s Edge database)

|Mode of Constituent Outreach |August 2018 | |vs. Previous Month | |vs. Previous Year |

| | | |July 2018 | |August 2017 |

|%Of Contact, % Education Related|66% | |79% | |69% |

|Adult Regional Coordinators |1,177 | |2,609 | |1,417 |

|Regional Program Managers |412 | |433 | |164 |

|Support Contacts with Community | | | | | |

|Alliances | | | | | |

|Community Alliance One on One |237 | |399 | |106 |

|Support within their Communities| | | | | |

|Newly Diagnosed Children |3 | |2 | |4 |

|Newly Diagnosed Adults |1 | |1 | |2 |

|Information Packets – Email |20 | |20 | |26 |

|Information Packets - Hard Copy |10 | |2 | |15 |

|Web Pop Up Capture-New to TS |30 | |38 | |58 |

|Alliance | | | | | |

|School Meetings Attended |6-CT, Co, AL, PA (3) | |1-NC | |5-VA, GA, FL, AL, NY |

|Free Educational Trainings |443 | |435 | |302 |

|Through PTIs | | | | | |

|# of Families Touched by Clinic |102 | |114 | |162 |

|Ambassador Program | | | | | |

|Educator Mentor Program |7 | |1 | |6 |

|Connections | | | | | |

|Education Parent Mentors |36 | |168 | |31 |

|# of Families Touched by |161 | |113 | |31 |

|Dependent Adult Transition | | | | | |

|Resource Coordinator | | | | | |

|# Attended Community Alliance |185 | |159 | |130 |

|Meetings | | | | | |

|Inspire Membership |6,115 from 123 countries | |6,095 from 124 countries | |5,228 from 111 countries |

|FaceBook Group Discussion |9,106 | |9,069 | |8,308 |

|FaceBook Nonprofit Followers |7,535 | |7,471 | |6,479 |

|Twitter Followers |1,938 | |1,956 | |1,730 |

|Instagram Followers |1,098 | |1,050 | |750 |

|Support to Other Countries |Colombia, Ghana, India, Kenya, | |China, Egypt, India, Ireland, | |Ecuador, India, Pakistan, Spain |

| |Mexico, Pakistan | |Uganda | | |

|Volunteer Hours |443 | |636 | |71 |

|# of Active Volunteer |184 | |105 | |39 |

|Participants | | | | | |

Increase diversity of Board membership and enhance staff skill sets to ensure execution of the strategic plan and to maintain recognition of TSC as a linchpin disorder.

A Strategic Planning Committee call was held on August 15 to review and discuss the “Build and Strengthen Organization” and the newly added goal of “Improving Access and Quality of Care” goals. The finalized draft of the OGSM and Theory of Change Document were discussed during the TS Alliance staff retreat on August 27.

The TS Alliance staff retreat took place August 27-30. In addition to the strategic plan documents, staff reviewed the five dysfunctions of a team and took an annual assessment, determined top ten goals for 2019, reviewed plans to develop a TSC University and discussed opportunities for a support services app. Additionally, Jeff Kroll, VP of Market Access and Payer Strategy at Greenwich Biosciences, gave a presentation on managed markets to grow the depth of understanding of medication access. Former board member Judy Shoulak and her daughter Sarah led the team through a workshop on Conflict Resolution, Culture and Team-Building.

Each Department reviewed and made updates to the staff back-up plans during the August staff retreat. These plans outline coverage for every staff position in both the short and long-term as well as required cross training necessary.

Quarterly coaching meetings were held with the executive and senior staff team during August where key performance objectives were also reviewed.

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