Boston Foundation for Sight

Transcription

1 Boston Foundation for Sight General Information 464 Hillside Avenue Suite 25 Needham, MA 2494 (781) Website Organization Contact Tara Stepanian Year of Incorporation

2 Statements & Search Criteria Mission Statement BostonSight's mission is to improve the quality of life for patients and families worldwide by transforming the understanding, treatment and care of complex corneal disease. Background Statement The Boston Foundation for Sight (BFS) is an internationally renowned not-for-profit eye healthcare organization dedicated to restoring vision and improving quality of life for our patients and their families. We strive to transform the understanding, treatment and care of complex corneal disease within the global medical community and the public at large. Since our founding in 1994, we have been innovative leaders in research and treatment of corneal conditions. Prosthetic replacement of the ocular surface ecosystem (PROSE) is a pioneering treatment model developed by the Boston Foundation for Sight to restore vision, support healing, reduce symptoms and improve quality of life for patients suffering with complex corneal disease. PROSE vision rehabilitation uses FDA-approved (1994) custom designed and fabricated prosthetic devices to replace or augment the impaired ocular surface system function. For many of the thousands of patients with conditions such as Stevens-Johnson syndrome, chronic ocular graft-versus-host disease (GVHD), dry eye syndrome, Sjogren s syndrome, keratoconus, pellucid marginal degeneration, ocular trauma, complications of LASIK, or complications of cornea transplantation, PROSE can be the ideal, and sometimes only, treatment capable of restoring vision and dramatically reducing symptoms such as eye pain, dry eye, blurry vision and light sensitivity. 2

3 Impact Statement 215 Accomplishments: More than 1,26 patients worldwide received BostonSight PROSE treatment; provided more than $523,55 in financial assistance to 161 patients in the Needham clinic and an additional $14,4 in assistance to 52 patients within the PROSE provider network; trained two new BostonSight Clinical Fellows in to the provider network at Brooke Army Medical Center in San Antonio, TX and at University of California, San Francisco, CA; continue to work on ways to make customization more efficient. 216 Goals Educate Increase widespread awareness and understanding of complex corneal disease through patient and public education, and professional education including post-doctoral residencies and clinical fellowships Empower Build resilient community networks that empower patients and families to live well with corneal disease by enhancing the capacity for learning, support, advocacy and collective action Treat Provide exemplary patient-centered care using a collaborative team treatment approach that restores vision, supports healing, reduces symptoms and improves quality of life, regardless of ability to pay Innovate Conduct cutting-edge clinical research and technological innovation in the design, manufacture and application of custom prosthetic devices that replace and/or enhance the function of the ocular surface ecosystem Transform Revolutionize standard of care by replicating our PROSE treatment model (prosthetic replacement of the ocular surface ecosystem) with our partners at world-class academic medical centers in the United States and abroad Needs Statement Program - Financial assistance. In order to eliminate barriers to treatment for those who are uninsured or underinsured, BostonSight provided more than $628, in financial aid to patients in Needham and within our domestic BostonSight Provider network. However the aid required by our patients outstripped philanthropic gifts. Program: SJS Care Weeks - An annual patient networking and outreach event dedicated to ocular treatment of survivors of Stevens Johnson Syndrome. SJS is a life-threatening skin condition in which cell death causes the epidermis to separate from the dermis. The syndrome is thought to be a hypersensitivity complex that affects the skin and mucous membranes. The immune reaction can be triggered by drugs or infection. SJS frequently causes the formation of scar tissue inside the eyelids, leading to corneal vascularization, impaired vision and a host of other ocular problems. SJS Care Week is designed to ensure on-going treatment of this population, defraying the costs of lodging and travel for those whom require assistance. 3

4 CEO/Executive Director Statement In 215, BostonSight provided care to more than 1,26 patients worldwide, providing financial assistance to over 16% of that population. Each patient who walks through our doors comes with their personal story of suffering and lives severely compromised by corneal disease. During the time they spend here, working one-on-one with a BostonSight PROSE clinician to restore their visual function, they not only regain their sight, but and then able to return home to reclaim their lives. We are often the last bastion of hope for people with complex corneal disease who have been in the medical system for years - trying to find the right solution - but continue to suffer. We are fortunate to offer to these patients this haven of care and of hope. It is a privilege to offer such amazingly high-tech and compassionate care and to change lives for the better. Service Categories Patient & Family Support Eye Diseases, Blindness & Vision Impairments Research Geographic Areas Served We are located in Needham MA, eight miles west of Boston. Our patient population is largely from the United States, but also travel from as far away as Canada and Mexico. Please review online profile for full list of selected areas served. 4

5 Programs Description The Boston Foundation for Sight, a (51)(c)(3) nonprofit organization, has a clinic and research facility that employees 28 doctors and support staff with a yearly budget of over $2,,. It has restored the vision and/or eliminated sever occular pain for more than one thousand patients. Budget Category Population Served,, Program Short Term Success Program Long term Success We saw eight times the number of patients seen in 23 with a 94% success rate. Program Success Monitored By Examples of Program Success 5

6 1. Prosthetic Replacement of the Ocular Surface Ecosystem Description Prosthetic Replacement of the Ocular Surface Ecosystem (PROSE) is a pioneering treatment model developed by the Boston Foundation for Sight to restore vision, support healing, reduce symptoms and improve quality of life for patients suffering with complex corneal disease. Budget Category Health Care, General/Other Population Served US& International,, Program Short Term Success Program Long term Success Program Success Monitored By PROSE treatment has significantly improved visual acuity and visual function in patients with corneal ectasia, irregular astigmatism and ocular surface disease who have failed convention therapies. Treatment has a high success rate when measured by ability to achieve satisfactory fit, impact on visual acuity and 6 month data on both continued wear and impact on visual function. BostonSight PROSE Treatment is an innovative and integrated treatment model for complex corneal disease developed by Boston Foundation for Sight (BostonSight). It uses FDA approved (1994) custom designed and manufactured prosthetic devices to replace or support impaired ocular surface function in cases of "distorted corneal surface or certain ocular surface disorders". We are committed to helping patients suffering with corneal disease so that their lives are no longer lost to constant eye pain or limited by poor visual function. Since our inception, we have helped over 5 patients worldwide. Estimated USA candidates for PROSE treatment are 57,. Of 199 patients seen, mean improvement NEI VFQ-25 = 22 points at 6 months; 19 points at 5 years. 6

7 Examples of Program Success Patient Story: Susan P. Dry eye began affecting Susan s life in her mid-5 s. My eyes were dry and sore all the time, and very sensitive to sunlight, and it just kept getting worse. It felt like my eyes had a headache all the time. When she arrived in Needham for BostonSight PROSE treatment, Susan s eye condition had worsened to the point that she couldn t tolerate bright light, and was unable use the computer, read, or drive a car. A busy professional who juggles several business ventures, and also volunteers with her certified therapy dog in her local school system, Susan was thrilled when she learned that PROSE might be the answer she was looking for. I had spent a ton of money on eye drops, expensive sunglasses, and many different doctors. When I heard about PROSE, I would have gone anywhere to try it. Lucky me, it was practically in my own backyard, said the coastal Massachusetts resident. PROSE treatment was a miracle for me. Everyone at BostonSight was pleasant, patient, and soothing, remembers Susan. Susan particularly enjoyed the community kitchen, where she met patients who had traveled there from around the world. It was beautiful to be able to experience all of those people able to see again. Now able to resume her active life, Susan has some advice for anyone going through their own personal healthy journey. Many people don t have the time or perseverance to keep researching and looking for a solution. But you have to be your own best advocate. When you have a health problem, don t give up! There is always a solution. 7

8 Management CEO/Executive Director Executive Director Mr. Gene Guselli Term Start Apr 216 Experience Gene was co-founder, President, and CEO of InfoMedics, Inc., a pharmaceutical company service provider of the leading global Software as a Service (SaaS) platform for the collection and analysis of patient generated health data used by clinicians to remotely manage patients. He orchestrated the sale of InfoMedics to Physicians Interactive, a digital healthcare marketing company owned by Merck. Gene became the President of Global Medical and Analytic Services for Physicians Interactive. As co-founder and CEO of Private Healthcare Systems, Inc., a privately held consortium of commercial healthcare insurance companies, Gene led the organization to become the largest National Preferred Provider Organization (PPO) in the US with five million members. Gene served as Vice President for Global Health Strategy for Mobiquity, Inc., a leading global healthcare digital/mobile professional services company. He has also held Director positions at Boston Medical Center and New York City Health and Hospitals Corporation. Additionally, Gene has worked as a Strategic Independent Consultant to multiple global life sciences, consumer health, and payer/provider clients, including: Partners Healthcare, the Center for Connected Health (CCH), Indegene Healthcare, TEVA Pharmaceuticals, Habitworks, Inc., IHopeNetworks, Zampeer, Inc., Cambridge Sound Management, and Stallergenes Pharmaceutical Company. Former CEOs Name Term Mr. Gene A. Bonte MBA May 21 - Apr 216 Mr. Gary F. Gut MBA Apr 29 - Apr 21 Staff Information Full Time Staff Part Time Staff Volunteers Contractors Retention Rate % Staff Demographics - Ethnicity African American/Black Asian American/Pacific Islander Caucasian

9 Hispanic/Latino Native American/American Indian Other 5 2 South East Asian Staff Demographics - Gender Male Female Unspecified 1 22 Formal Evaluations CEO Formal Evaluation CEO/Executive Formal Evaluation Frequency Senior Management Formal Evaluation Senior Management Formal Evaluation Frequency NonManagement Formal Evaluation Non Management Formal Evaluation Frequency Annually Annually Annually Plans & Policies Organization has a Fundraising Plan? Organization has a Strategic Plan? Organization Policy and Procedures Nondiscrimination Policy Whistleblower Policy Document Destruction Policy Permit? Under Development Under Development Under Development Under Development 9

10 Board & Governance Board Chair Board Chair Mr. Gary Knaak Company Affiliation Content Central/Partners + Napier Term June 214 to June 217 Gary.Knaak@contentcentralagency.com Board Members Name Affiliation Status Ms. Pamela J. Anderson Esq Clarkin & Phillips, PC Voting Mr. Eugene A. Bonte Retired Exofficio Mr. Mark Ealey MuLantix LLC Voting Mr. Gene Guselli BostonSight, President and CEO Voting Mr. Andrew Hirsch MBA BIND Therapeutics Voting Ms. Beverly R. Johnston Community Volunteer Voting Mr. Michael Kane MBA Kane Consulting Group Voting Mr. Gary Knaak Partners + Napier Voting Ms. Barbara Joyce McNeil MD, PhD Ridley Watts Professor, Harvard Medical School Voting Mr. Michael B. Raizman MD Ophthalmic Consultants of Boston Voting Mr. Clifford Scott OD, MPH Ms. Kathleen "Kate" Weingarten MBA, CFA, MPA New England College of Optometry Community Volunteer Voting Voting Board Demographics - Ethnicity African American/Black Asian American/Pacific Islander Caucasian 12 Hispanic/Latino Native American/American Indian Other Board Demographics - Gender Male Female Unspecified 8 4 Board Information 1

11 Board Term Lengths Number of Full Board Meetings Annually Written Board Selection Criteria? Written Conflict of Interest Policy? Percentage Making Monetary Contributions Constituency Includes Client Representation 3 4 Under Development Under Development 1% Standing Committees Development / Fund Development / Fund Raising / Grant Writing / Major Gifts Audit Board Governance Finance Membership 11

12 Financials Fiscal Year Fiscal Year Start Jan 1, 216 Fiscal Year End Dec 31, 216 Projected Revenue $5,749,326. Projected Expenses $6,27,94. Endowment? No Spending Policy N/A Credit Line? Reserve Fund? Months Reserve Fund Covers Detailed Financials Revenue and Expenses Fiscal Year Total Revenue $5,88,573 $6,125,32 $6,922,879 Total Expenses $5,93,48 $6,263,515 $6,325,719 Revenue Sources Fiscal Year Foundation and Corporation Contributions Government Contributions $ $ $ Federal State Local Unspecified Individual Contributions $393,538 $366,441 $446,939 Indirect Public Support Earned Revenue $5,247,292 $5,54,494 $6,94,4 Investment Income, Net of Losses -- $18 $393 Membership Dues Special Events Revenue In-Kind -- $143,137 $239,761 Other $167,743 $74,942 $141,746 12

13 Expense Allocation Fiscal Year Program Expense $4,237,23 $4,279,321 $4,99,438 Administration Expense $1,47,588 $1,549,94 $1,84,395 Fundraising Expense $222,689 $435,1 $421,886 Payments to Affiliates Total Revenue/Total Expenses Program Expense/Total Expenses 71% 68% 65% Fundraising Expense/Contributed Revenue 57% 119% 94% Assets and Liabilities Fiscal Year Total Assets $4,51,116 $5,251,163 $5,19,42 Current Assets $4,92,857 $4,741,355 $4,536,643 Long-Term Liabilities $ $ $ Current Liabilities $384,476 $1,12,616 $813,39 Total Net Assets $4,116,64 $4,238,547 $4,377,3 Short Term Solvency Fiscal Year Current Ratio: Current Assets/Current Liabilities Long Term Solvency Fiscal Year Long-Term Liabilities/Total Assets % % % Top Funding Sources Fiscal Year Top Funding Source & Dollar Amount Second Highest Funding Source & Dollar Amount Third Highest Funding Source & Dollar Amount Capital Campaign Currently in a Capital Campaign? No Comments Foundation Staff Comments Financial summary data in charts and graphs are per the organization's audited financials. Contributions from foundations and corporations are listed under individuals when the breakout was not available. Created Copyright 218 The Boston Foundation 13