The Cape Cod Chonicle 9/14/24
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Press Release 4/2/24
Lillylulu Foundation partners with Outer Cape Health Services with major gift to establish Integrated and Collaborative Endocrine Program focused on Type 1 Diabetes (T1D) serving the communities and patients throughout Cape Cod
HARWICH PORT, MA (April 2, 2024) – In a first-of-its-kind agreement on Cape Cod, a newly formed partnership between Outer Cape Health Services (OCHS), a 501c3 community health center serving the Lower and Outer Cape, and the Lillylulu Foundation, a 100% volunteer T1D-focused 501c3 targeting underserved and underfunded areas, have announced a partnership to create an integrated endocrine services care model by linking the consultant endocrinologist, the nurse care manager and the patient’s primary care provider (PCP). The establishment of this partnership, funded by an initial $100,000 commitment from the Lillylulu Foundation, will provide for added OCHS resources, commencing with a nurse care manager position overseeing T1D patient care plans.
This collaborative program will have an immediate impact on addressing the gap that exists for patients that require customized and tailored care which is a major obstacle for T1D patients everywhere. “This is particularly acute on Cape Cod with underserved communities and those patients that rely primarily on the community health center model to receive the required care to live day-to-day with T1D and other endocrine focused needs,” according to Dr. Damian K.L. Archer, CEO of Outer Cape Health Services. “OCHS and the Lillylulu Foundation believe this partnership will be the catalyst to formalize the integrated endocrine services care model on Cape Cod. Lillylulu’s gift will immediately enhance the resources available to proactively reach our high-risk patients and those most in need.”
“The Lillylulu Foundation remains keenly focused on innovative and creative care to lift patients who face significant barriers due to challenging social determinants of health,” adds John Lashar, President of the Lillylulu Foundation, Inc. “In addition to hopefully attracting more donors and additional capital interested in such a direct impact program, this partnership is hopeful that we will create a roadmap for other programs and institutions to follow so basic care and support can be integrated for the benefit of all, while closing the inequity gaps that exist today.”
Establishing the Integrative and Collaborative Care Model at OCHS
Over several months of communication between the two organizations, the partnership formulated a multi-step plan that will require further resources as additional funding and follow-on support are provided. Integrated endocrinology allows PCPs to have a higher level of confidence and comfort managing most endocrine conditions because of on-demand access to an in-house consultant endocrinologist. The partnership believes this is the leanest way to provide endocrine support with minimal staffing of endocrine-trained clinical staff. The endocrine team with integrated care is maximally available for PCP support and consultation. In order to establish an endocrine service that uses an integrative and collaborative care model, the program requires, at a minimum, an in-house consultant endocrinologist and a full-time nurse care manager who will be the point person responsible for providing one on one support to patients with T1D, and, eventually, a collaborative care partner upon program expansion.
The nurse care manager will perform intake assessments on all patients referred to the endocrine service to
determine the level of complexity and urgency of the needs of the patients and serve as an immediate contact for all new or newly diagnosed patients with T1D as well as the tangible link between our municipal and educational partners in care.
“I want to echo my heartfelt thanks to The Lillylulu Foundation,” says Dr. Archer. “This gift will help us to quickly set into motion an innovative model of care close to home for those in need of T1D care on the Cape. I look forward to sharing with everyone the positive impact this program will have on our patients (current and future) who desperately need this support to achieve maximum wellness. Creative care and support from the private sector are required for OCHS to effectively fulfill our mission and strategic plan.”
Co-Founder and Director of the Lillylulu Foundation and T1D patient, Lilly Lashar (22) offers, “As a patient of Boston Children’s Hospital and recipient of the greatest care available in the world, having T1D is a struggle every day as it does not stop or turn off. I have had the good fortune to have access to elite care and technology. It is important to me that we, as a Foundation and a T1D community, do everything we can to expand access of both care and the latest technology to everyone living with this difficult disease. The lack of care leads to major health issues, a reduction in life expectancy and, in many cases, death. This partnership is a first step we are undertaking on Cape Cod to achieve greater access and equity in this space.”
Strong Community Support
Harwich resident, T1D patient, and Lillylulu Foundation board member, Michael MacAskill, has spearheaded the foundation’s search for an impact partner here on Cape Cod which has led to this unique and powerful relationship. Mr. MacAskill is quick to point out that the support for the Lillylulu Foundation and the partnership with The Monomoy Shootout Fishing for a Cure event is the major reason for the organization being in a position to establish customized, direct impact programs focused on need and real results. Held in Chatham, MA in August, the fishing tournament has raised over $600,000 net to the Lillylulu Foundation via community donors and event participants. “We saw the need to fill gaps in the healthcare system and we dreamed about things we might be able to do together to directly address and help people. We are driving at areas most in need by applying disciplined plans, financial support, and actionable results data to further highlight the unfortunate under resourced nature of healthcare today. Basic healthcare, insurance coverage, and policy alone do not meet the needs of our community. On Cape Cod and beyond, some of these basic elements are not accessible. We have found the perfect partner in OCHS. Our aim is to change and grow this, and we believe we will.”
More about the Lillylulu Foundation, Inc.
The Lillylulu Foundation, Inc. is a 100% volunteer based 501c3 organization that created to harness the generosity and focus of a group of T1D donors and influencers to have an efficient, meaningful, and direct impact on the T1D community. The impact we strive for is to be a contributor to finding a cure through research and to address systematic deficiencies in care (physical and mental) by improving outcomes for those diagnosed with T1D. We believe that providing direct gifts in focused initiatives will allow the Lillylulu Foundation to use its strengths of PASSION and DISCIPLINE to monitor the intended and actionable outcomes of those we choose to partner with.
Our “Areas of Focus” are Research (Cure and Treatment); Basic Physical and Psychosocial Care & Support of the Underprivileged and Diverse populations; Endocrinologist Advancement & Education; and Advocacy. Making as great an impact as possible is at the core of the Lillylulu Foundation—created by the family of a T1D young lady named Lilly. Learn more at www.lillylulufoundation.org.
About Outer Cape Health Services
Founded in 1987, Outer Cape Health Services operates not-for-profit community health centers in Harwich Port, Wellfleet, and Provincetown. OCHS offers primary care, behavioral health, recovery services, telehealth, pharmacy service, community resource navigation, and other specialty care, and urgent care, radiology, and optometry services in Provincetown. OCHS serves 20,000 residents and visitors annually on the lower and outer Cape.
As a mission-driven organization, OCHS provides access to high quality, community-based healthcare for patients and visitors from Yarmouth to Provincetown, regardless of their ability to pay. OCHS is a licensed Medical Clinic and Addiction Treatment site of the Massachusetts Department of Public Health and a Federally Qualified Health Center (FQHC) designated by the Health Resources and Services Administration (HRSA). OCHS is recognized by both HRSA and the Joint Commission for being an outstanding community healthcare organization and is a member of the Massachusetts League of Community Health Centers. To learn more, visit outercape.org.
Press Release 11/8/23
Boston Children’s Hospital and Lillylulu Foundation, Inc. Partner with the Establishment of the Lillylulu Foundation Fund for T1D at Boston Children’s Hospital
BOSTON, MA (November 7, 2023) – In a groundbreaking partnership between Boston Children’s Hospital Diabetes Program, ranked #1 by U.S News and World Report, and the Lillylulu Foundation (www.lillylulufoundation.org), a 100% volunteer T1D focused 501c3 targeting underserved and underfunded areas, have announced a multiyear partnership to establish the Lillylulu Fund for T1D at Boston Children’s Hospital with a generous initial gift of $250,000 from the foundation. The establishment of this Fund will have an immediate impact on closing the gap for underserved families and improving health outcomes for children with T1D. The Fund will support a dedicated diabetes resource nurse who will provide patients with access to and education on T1D care, technology and implement innovative processes for proactive outreach to high-risk families.
The partnership is, in part, a response to recent studies and data that reveal racial, ethnic and socioeconomic disparities in diabetes technology use that exists. The advanced technology available including CGM and hybrid closed loop device use have widened existing health equity gaps among non-white children in the United States. The research conducted at numerous diabetes centers throughout the country document these inequities, with individuals from underrepresented minority groups and those with public insurance demonstrating lower CGM and pump use with higher hemoglobin A1c values. This program is being launched under the leadership of Boston Children’s Diabetes Program Director Kate Garvey, MD, MPH and Gretchen Waldman, MSN, RN, CDCES following a very successful pilot that served over 400+ families identified as high risk in tapping the promise of direct care and the latest in diabetes technology. Dr. Kate Garvey states, “The incredible support from the Lillylulu Foundation is a game changer for our program and families. This gift will help us even the playing field for outcomes, prepare to integrate new therapies that emerge, and keep health care disparities at top of mind. I am profoundly grateful for their support, and very excited to work together.”
Co-Founder and Director of the Lillylulu Foundation, Lilly Lashar (21), states, “As a patient of Boston Children’s Hospital and recipient of the greatest care available in the world, having T1D is a struggle every day as it does not stop or turn off. I have had access to elite care and technology and it is important to me that we as a Foundation and a T1D community do everything we can to expand access of both care and the latest technology to everyone living with this difficult disease. The lack of care leads to major health issues, a reduction in life expectancy and in many cases, death. This collaboration and partnership is a first step we are undertaking to achieve greater access and equity in this space.” Co-Founder and President of the Foundation, John Lashar, attributes this first of its kind partnership with the Boston Children’s Diabetes Program to the many private donations made to the Lillylulu Foundation and the new partnership with The Monomoy Shootout, Fishing for a Cure event (www.monomoyshootout.com) held this past August in Chatham, MA which raised over $600,000 net to the Lillylulu Foundation. “We are fortunate to be surrounded by many generous and passionate people and corporations that have allowed for such a direct impact so quickly. We are harnessing the goodness of people, the desire to make a direct impact and addressing a need that should be avoidable in today’s world through basic healthcare, insurance coverage and policy. Unfortunately, too many in the T1D population do not get what they need for basic care of the disease which is relentless hour by hour and day by day. Our aim is to change this.”
The Lillylulu Foundation Fund for T1D at Boston Children’s Hospital will allow for the diabetes team to focus care in innovative ways that support device use, lifting patients who face significant barriers due to poor social determinants of health. In addition to hopefully attracting more donors and additional capital interested in such a direct impact program, this partnership is hopeful that this will create a roadmap for other programs and institutions to follow so that new technologies and care can be integrated for the benefit of all and closing the inequity gaps that exist today.
About Boston Children’s Hospital Diabetes Program: Type 1 Diabetes (T1D) is an autoimmune disease and is one of the most chronic diseases of childhood, second only to asthma in frequency. The Diabetes Program at Boston Children’s Hospital is dedicated to empowering children to manage diabetes and live health lives. We are one of the largest pediatric centers in North America. We treat infants, children, adolescence and young adults with diabetes. The Program currently has roughly 2500 established T1D patients with another 250-300 new patients diagnosed here at the hospital each year. T1D requires unending attention to glucose monitoring, carbohydrate intake, insulin administration, exercise and sick day management, placing heavy demands on the families and caregivers to learn and carry out these tasks.
About the Lillylulu Foundation, Inc.: The Lillylulu Foundation, Inc. (www.lillylulufoundation.org) is a 100% volunteer based 501c3 organization that has been created to harness the generosity and focus of a group of T1D donors and influencers to have an efficient, meaningful and direct impact on the T1D community. The impact we strive for is to be a contributor to finding a cure through research and to address systematic deficiencies in care (physical and mental) by improving outcomes for those diagnosed with T1D. As parents and friends of T1D’s, our mission is rooted in “Areas of Focus” that we intend to provide directed giving. We believe that providing direct gifts in focused initiatives will allow the Lillylulu Foundation to use its strengths of PASSION and DISCIPLINE to monitor the intended and actionable outcomes of those we choose to partner with. As a 100% volunteer organization, we will seek out partners and organizations with fresh ideas and those that we believe are underfunded within our “Areas of Focus” to create relationships that allow us to drive influence and positive outcomes for our T1D community. Making as great an impact as possible is at the core of why the Lillylulu Foundation has been created by the family of a T1D young lady named Lilly. Our “Areas of Focus” are: Research (Cure and Treatment), Basic Physical and Psychosocial Care & Support of the Underprivileged and Diverse populations; Endocrinologist Advancement & Education and, of course, Advocacy.
