8 Organizations in New York Dedicated to Specific Medical Conditions
Dealing with a medical problem can be taxing, and sometimes people living with illnesses and disorders need a helping hand. That's why the New York organizations on this list work to research and treat specific conditions, and support and advocate for those who are affected by them. If you're interested in improving the quality of life of people with AIDS, lymphoma, kidney failure, and other issues, consider supporting these groups. This video was made with Ezvid Wikimaker.
NY Groups Helping People With Medical Conditions
| Organization | Mission |
|---|---|
| Lymphoma Research Foundation | Eradicate lymphoma and serve those touched by this disease |
| Housing Works | End the dual crises of homelessness and AIDS through relentless advocacy, the provision of lifesaving services, and entrepreneurial businesses that sustain our efforts |
| Oley Foundation | Enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking and serve as a resource for consumer's families, clinicians and industry representatives, and other interested parties |
| Broadway Cares Equity Fights AIDS | Mobilize the unique abilities within the entertainment industry to mitigate the suffering of individuals affected by HIV/AIDS |
| Young Survival Coalition | Strengthen the community, address the unique needs, amplify the voices, and improve the quality of life of young adults affected by breast cancer, locally, nationally, and internationally |
| American Institute for Stuttering | Provide universally affordable, state-of-the-art speech therapy to people of all ages who stutter, guidance to their families, and much-needed clinical training to speech professionals wishing to gain expertise in stuttering |
| National Kidney Foundation | Prevent the growing public health challenge of kidney disease, improve the health and well-being of individuals and families affected by kidney disease, and promote organ donation |
| National Eating Disorders Association | Support individuals and families affected by eating disorders and serve as a catalyst for prevention, cures, and access to quality care |
Facts & Myths About Organ Donation
| Statement | True or False | Explanation |
|---|---|---|
| People with illnesses or health conditions can still be organ donors | Only a few conditions (such as active cancer or a systemic infection) would absolutely prevent a person from becoming a donor | |
| Seniors are too old to donate | The health of the organs is more important than the donor's age | |
| You can choose which organs you're willing to donate | Donors can opt to donate organ, eye, tissue, or all three and can change their status at any time | |
| Organ donation goes against most religions | While there are some outliers, organ donation is supported by many religions in the U.S. | |
| People often die while waiting for a transplant | According to the U.S. Health Resources & Services Administration, 20 people die each day due to a lack of viable organs | |
| Most organ donors actually donate their organs when they die | Only 3 in 1,000 people die in a way that allows for organ donation |
Phases of Medical Research
- Basic medical research: Establishes an understanding of the issue and its effects on humans
- Preclinical research: Figures out how best to test an experimental treatment or cure
- Clinical research: Research is done on real people, under the supervision of physicians in a medical
AIDS In New York: Diagnoses & Deaths
Number of people diagnosed with AIDS and deaths of people diagnosed with AIDS throughout the state of New York, according to the Department of Health
| Year | Diagnoses | Deaths |
|---|---|---|
| 1990 | 9,056 | 6,408 |
| 1991 | 10,522 | 7,356 |
| 1992 | 12,771 | 8,007 |
| 1993 | 14,521 | 8,468 |
| 1994 | 13,990 | 9,535 |
| 1995 | 12,800 | 9,510 |
| 1996 | 10,606 | 6,956 |
| 1997 | 8,231 | 3,911 |
| 1998 | 6,424 | 3,179 |
| 1999 | 6,036 | 3,201 |
| 2000 | 6,993 | 3,097 |
| 2001 | 6,283 | 2,946 |
| 2002 | 5,336 | 2,909 |
| 2003 | 6,011 | 2,897 |
| 2004 | 4,973 | 2,706 |
| 2005 | 4,946 | 2,650 |
| 2006 | 4,415 | 2,465 |
| 2007 | 4,235 | 2,325 |
| 2008 | 3,840 | 2,283 |
| 2009 | 3,427 | 2,152 |
| 2010 | 2,879 | 1,967 |
| 2011 | 2,622 | 1,933 |
| 2012 | 2,268 | 1,785 |
| 2013 | 2,057 | 1,776 |
| 2014 | 1,597 | 1,694 |
| 2015 | 1,491 | 1,599 |
| 2016 | 1,525 | 1,605 |
| 2017 | 1,332 | 1,251 |
The Importance Of Trust In Healthcare
In Depth
For all but the rarest of medical conditions, diseases, and disorders, there are nonprofit organizations that focus specifically on the needs of those diagnosed and those who study and treat them. Such groups offer support, concentrate resources, and build collective power to pursue the interests of the afflicted. New York is home to many of these kinds of institutions. This list, presented in no particular order, surveys the work of eight of them.
In the #1 spot is The Lymphoma Research Foundation. Its mission is to eradicate this disease and serve those touched by it. Lymphoma is the most common type of blood cancer, affecting lymphocytes, a type of white cells that travel through the blood and lymphatic system to defend the body against foreign invaders like bacteria and viruses. There are three different major forms of the condition, which are cumulatively diagnosed in more than 100,000 patients in the United States every year on average.
The foundation devotes itself to improving care and outcomes through investment in the most promising research. It funds scientists to explore new avenues of treatment in order to combat challenges that arise from the impact of limited grant funding and the evolving medical landscape. To those who suffer from the disease or have survived it, as well as their families, it offers educational programs, publications, and support services, including a free helpline. Contribute to these efforts by joining Team LRF to participate in fundraising events.
The foundation devotes itself to improving care and outcomes through investment in the most promising research.
At #2, it's Housing Works, a healing community of people living with and affected by HIV and AIDS. The organization's goal is to end the dual crises of homelessness and this disease through relentless advocacy, the provision of lifesaving services, and entrepreneurial businesses that sustain such efforts. Founded in 1990, the group has become widely known in New York for its Soho bookstore and chain of thrift shops, which in addition to serving as a source of revenue, distribute information about the issues it addresses and provide free prophylactics.
Housing Works engages in an array of advocacy strategies, pushing for testing, treatment, prevention, shelter, access to care, and the end of HIV stigma. Its services division has addressed the needs of over 30,000 individuals that other organizations deem too challenging to serve, through a harm reduction framework. Initiatives include a network of medical providers, a job training program for people dealing with chronic illness, legal advice, and affordable housing. Help out by donating items to be sold at one of the stores.
#3: The Oley Foundation, a nonprofit that strives to enrich the lives of those who depend on home intravenous nutrition, or parenteral systems, and tube feeding, also known as enteral delivery, through education, advocacy, and networking. The Foundation also serves as a resource for consumer's families, clinicians and industry representatives, and other interested parties. Free membership includes access to a bi-monthly newsletter, national and regional conferences, an information service, and an equipment and supply exchange, among other programs.
Free membership includes access to a bi-monthly newsletter, national and regional conferences, an information service, and an equipment and supply exchange, among other programs.
Oley administers a number of efforts to connect patients with one another and health providers, most notably through its Ambassador Network, made up of volunteer consumers and caregivers who understand the challenges faced by those who rely on home nutrition interventions. An advocacy branch undertakes awareness campaigns, actions addressing drug shortages, and legislative programs. The group also shares knowledge online and sponsors its own studies. Get involved by donating to one of many different funds.
In at #4, Broadway Cares Equity Fights AIDS helps men, women and children across the country and across the street receive lifesaving medications, healthcare, nutritious meals, counseling, and emergency financial assistance. Drawing upon the talents, resources, and generosity of the American theatre community, it is one of the nation's largest industry-based, nonprofit fundraising and grant-making organizations focused on the disease. Since 1988, the group has raised more than 300 million dollars for essential patient services.
Different grants, including a fund for entertainment industry professionals and one for different state-level service providers, draw from a philanthropic budget raised entirely in-house. Fundraising efforts include Classical Action, focused on classical, opera, and jazz events; and Dancers Responding to AIDS, spotlighting a different area of the performing arts. Education Outreach efforts bring theater and music pros to schools around the country. There is also an array of affiliate organizations. Kick in by purchasing something from the online store.
Education Outreach efforts bring theater and music pros to schools around the country.
The #5 spot is held by Young Survival Coalition, which strengthens the community, addresses the unique needs, amplifies the voice, and improves the quality of life of young adults affected by breast cancer, locally, nationally and internationally. The organization was founded in 1998 by a group of young women in New York who had all been diagnosed before age 40. They had all personally experienced that young adults were missing from the research and conversations about the disease.
Young adults diagnosed with breast cancer face issues that may significantly impact their quality and length of life, often contracting more aggressive forms of the condition, and dealing with higher mortality rates, fertility issues, and the possibility and ramifications of early menopause. In addition to providing information and facilitating networking between sufferers, YSC sponsors research into the relatively understudied effects of the disease on younger people. Get involved by riding in Tour de Pink, the group's annual, multi-day charity bike ride.
#6, the American Institute for Stuttering, aims to be a place where people who stutter know they are understood and supported, and a setting where they can free their voice. It offers a range of services, including early intervention for children as young as two years, individual therapy for children and adults, specialty group workshops, a weekly practice and support group, and immersion programs that run throughout the year. The group also conducts sessions over the internet for clients for whom telepractice is a more convenient option.
It offers a range of services, including early intervention for children as young as two years, individual therapy for children and adults, specialty group workshops, a weekly practice and support group, and immersion programs that run throughout the year.
In-person and online events include a speaker series, question and answer sessions, storytelling workshops, and discussions for parents of young children who stutter. AIS also lobbies in Washington, calling for an increase in government support for stuttering research. The organization can boast of playing a role in successfully persuading Congress to introduce groundbreaking legislation that led, among other things, to the convening of a national conference on scientific research into the speech disorder. Show your support by donating.
Here at #7, National Kidney Foundation wants to be a lifeline for all people affected by kidney disease. In their support for scientific research and innovation, the institution focuses on the whole patient through the lens of kidney health. One in three American adults is at risk for kidney disease. Major risk factors include diabetes, high blood pressure, a family history of kidney failure, and being age 60 or older. The foundation's prevention campaigns urge people likely to be vulnerable to this malady to ask their doctor for a urine test.
NKF offers a range of educational material to those recently diagnosed, as well as longtime sufferers. It also directly provides resources to people affected by kidney disease, organ donation, or transplantation, and to their family and caregivers too. The group also undertakes policy advocacy, and facilitates a number of useful programs for kidney professionals, including an online career center, multiple scholarly journals, and an information and education clearinghouse. The most profound way to offer solidarity to these efforts is to become an organ donor.
The group also undertakes policy advocacy, and facilitates a number of useful programs for kidney professionals, including an online career center, multiple scholarly journals, and an information and education clearinghouse.
Finally, for #8, we've got The National Eating Disorders Association, the largest non-profit organization dedicated to supporting individuals and families affected by these conditions, serving as a catalyst for prevention, cures, and access to quality care. Eating disorders are serious, life-threatening illnesses that affect all kinds of people, regardless of gender, ethnicity, size, age, or background. They have the second highest mortality rate of all mental health diagnoses.
The association raises awareness, builds communities of support and recovery, funds research, and puts life-saving resources into the hands of those in need. Its blog is a lively forum for eating disorder discussion, offering a space for reflection, storytelling, and advice from those who have experience with anorexia nervosa, bulimia, binge-eating, and the like. There are also articles for professionals and loved ones. Give to this institution through a donation or by attending the annual gala.
