Guide & Purpose
OUR MISSION is to provide support to the leukodystrophy community and enable platforms to accelerate improving patient quality of life and finding cures.
OUR VISION is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, we provide support, networking, and education to help navigate the journey of the disease.
Located in DeKalb, Illinois, the United Leukodystrophy Foundation (ULF), is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling. The ULF works to establish a communication network among families; as well as increases public awareness and acts as an information source for health care providers by promoting and supporting research into causes, treatments, and prevention of the leukodystrophies.
Leukodystrophies comprise a group of genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted.
Every year, the ULF puts a call out to the leukodystrophy medical professional community asking for research proposals in need of funding. The number of grant applications have consistently grown in the past years with submissions coming in from all over the United States as well as internationally. Proposals are considered by our Medical and Scientific Advisory Board and ranked based on merit and potential impact to the field. Thanks to your generous donations, the ULF has been able to grant $450,000 for medical research since 2010.
Incorporated in 1982, the United Leukodystrophy Foundation is solely supported and funded by donations.
Federal Tax Identification Number/EIN: 35-1557361
- We believe patients affected with a leukodystrophy can lead happy, fulfilling lives if given access to the correct resources, information, and medical specialists who treat the disease. We believe they can find the balance to embrace life while finding strength to navigate the medical and emotional challenges. We believe patients are underrepresented in the medical community and deserve to be treated with respect and compassion through diagnosis and ongoing care. We believe these patients inspire those around them with their warmth, kindness, appreciation of life, and hope for the future.
- We believe that caregivers and families affected by a leukodystrophy are the finest advocates for their loved one and should have access to the necessary information to provide the best support. We believe that caregivers and families play an important role in raising awareness and teaching the public about these diseases. We believe that they can often feel overwhelmed and burdened at times and should not be afraid to ask for help. These caregivers and families deserve empathy and a place to turn when coping with the challenges associated with caring for a loved one affected by a leukodystrophy.
- We believe partnerships with other leukodystrophy patient advocacy groups (PAGs) will benefit all patients with a leukodystrophy by avoiding duplication of efforts, leveraging resources, unifying the medical and research community, and strengthening our reach, messaging and awareness. We believe collaboration can accelerate each PAG’s mission, while working in tandem with one another to drive research and provide superior support for all patients and their families.
- We believe that science/research provides encouragement and hope to patients, families and the leukodystrophy community. We believe that fostering a collaborative environment between researchers, physicians, patients and other advocates will take us one step closer towards better treatments to slow down the progression of the disease, and ultimately, a cure. We believe that science will help to expose the complex pathophysiology of individual leukodystrophies and should focus on both short term and long-term wins to improve the quality and quantity of life for our members.
- We believe the ULF is an irreplaceable, essential and trustworthy umbrella organization bringing together patients, caregivers, the medical and research community, and other patient advocacy groups to drive forward collaboration. We believe that ULF has an established history and acumen of welcoming and supporting patients and their families with accurate, reliable information, peer-to-peer support, and access to medical experts who study and treat the leukodystrophies. We believe the ULF needs to be a driving force behind collaboration within the leukodystrophy community to enable faster development of therapeutic approaches and cures.
Dr. Hugo Moser (1924-2007)
Moser was a research scientist and the leading mind pioneering advances in peroxisomal and lysosomal disorders. He and his wife, Ann, worked together at the Kennedy Krieger Insititute in Baltimore, Maryland to create treatment options for the leukodystrophies and make them readily available to the patients who so desperately needed them. Moser collaborated with the founding members of the United Leukodystrophy Foundation – parents of the children who received the devastating diagnosis – to create a support network that would provide guidance and resources to the growing community. The passion and dedication of the Mosers allowed the ULF to continue to thrive from its humble roots into the organization it is today. Hugo Moser passed away in 2007. Ann Moser still works in the research department that bears their name within the Kennedy Krieger Institute.