organizational growth: building community & longevityorganizational growth: three case studies...
TRANSCRIPT
![Page 1: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/1.jpg)
https://globalgenes.org/raresymposium/ #GGPennRareSymposium #PennMedMDBR2016
Organizational Growth:
Building Community & Longevity
Sue Sherman, MHA
Executive Director, LAM Foundation
Proudly supported by:
![Page 2: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/2.jpg)
![Page 3: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/3.jpg)
Organizational Growth:Three Case Studies in Building
Community & Longevity
Sue Sherman, MHA
Executive Director, The LAM Foundation
Rare Patient Advocacy Symposium
May 6, 2016
![Page 4: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/4.jpg)
“The future is not something we enter. It is something we create.”
~ Leonard I. Sweet
![Page 5: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/5.jpg)
1995 2016
![Page 6: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/6.jpg)
May 2015: FDA Approval of Rapamune for treatment of LAM
NCT00414648
20 Years of Effort
![Page 7: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/7.jpg)
![Page 8: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/8.jpg)
The LAM Foundation Model of Success
1. Continuously engaging the hearts and trust of LAM patients.
2. Research is the core of the mission.
3. Access to consistent and passionate scientific leadership with a goal of nurturing and distributing expertise.
4. Joint research and patient donferences.
5. Collaboration, innovation and gratitude.
![Page 9: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/9.jpg)
1. LAM Biomarker Innovation Summit2. LAM Clinic and Research Network3. Annual LAM Research Conference &
LAMposium
Three Case Studies
![Page 10: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/10.jpg)
LAM Biomarker Innovation Summit
![Page 11: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/11.jpg)
• 2 Day Scientific Meeting
• 50 Scientists; diverse expertise
• Patient Survey
• Rapid presentations followed by discussion groups
• Major donor plus LAM community funding: match/mail/social media
• 6 BIG Grants awarded (Biomarker Innovation Grants: $185,000
LBIS: November 2014
![Page 12: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/12.jpg)
![Page 13: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/13.jpg)
![Page 14: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/14.jpg)
BIG: Biomarker Innovation Grant Awards
Brian Bartholmai,
MD
Mayo Clinic -
Rochester
Elizabeth Henske, MD
Brigham & Women’s
Hospital
Simon Johnson, MD
Nottingham University
![Page 15: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/15.jpg)
BIG: Biomarker Innovation Grant Awards
David Kwiatkowski, MD,
PhD
Brigham & Women’s
Hospital
Raymond Yeung, MD
University of WashingtonCarmen Priolo, MD, PhD
Harvard Medical School
![Page 16: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/16.jpg)
Access to Clinical Expertise and Research
Network
![Page 17: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/17.jpg)
U.S. LAM Clinics
LAM patientLAM Clinic
Data center
![Page 18: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/18.jpg)
AustraliaBrazilCanadaChinaCroatia
FranceIsraelJapanMexicoRussia
South KoreaSpainSwitzerlandThe NetherlandsUnited Kingdom
InternationalLAM Clinics
![Page 19: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/19.jpg)
New Disease CommunitiesLAM 3280Alpha 1 AT 2054Sjogren’s cystic 1281Langerhan’s 749Alveolar proteinosis 706Birt-Hogg-Dube 434Lymphangiomatosis 136PAM 49PCH 25PVOD 53LCDD 22
NCATS Rare Lung Disease Consortium (RLDC)
Hermansky Pudlak Syndrome 50Dif. idiopathic neuroendocrine cell hyperplasia 83Castleman’s Disease 176Benign metastasizing leiomyoma 74Erdheim-Chester 34IgG4 Lung Disease 333Cryptic cause cystic lung disease 390Plastic bronchitis 21Yellow nail syndrome 30Nontuberculous mycobacteria 6342Pleuropulmonary fibroelastosis 42
![Page 20: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/20.jpg)
Joint Research and Patient Conferences
![Page 21: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/21.jpg)
2016 Rare Lung Disease Research Conference & LAMposium
Cincinnati Marriott RiverCenterCovington, KY
September 22-25, 2016
![Page 22: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/22.jpg)
• 1:1 Patient to Scientist-Clinician Ratio
• 118 LAM patients; 120 Friends/Family; 108 Scientists
• Remembrance Room
• $217K raised for research at Fund A Cure
• 59,667,276 Media impressions
• Scientific Presentations, Awards and Posters
• Research Room
• Board Meetings, Video production
2015 LAMposium Chicago
![Page 23: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/23.jpg)
LAM Liaison Network
• 35 Volunteers – all women with LAM• 21 Regions; Quarterly calls; LAMposium scholarship• 2015: 31 Meetings; 17 LAM Clinics; 500 educated• Support for newly diagnosed and families
![Page 24: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/24.jpg)
MAP here
Regional Map
![Page 25: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/25.jpg)
LAM/TSC Joint Conferences
![Page 26: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/26.jpg)
“Never doubt that a small group of thoughtful, committed citizens can
change the world; indeed, it's the only thing that ever has.”
~Margaret Mead
![Page 27: Organizational Growth: Building Community & LongevityOrganizational Growth: Three Case Studies in Building Community & Longevity Sue Sherman, MHA Executive Director, The LAM Foundation](https://reader033.vdocuments.net/reader033/viewer/2022051811/6027a04fc5cf7b6354329952/html5/thumbnails/27.jpg)