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Lotsa Helping Hands Resource Directory
| Alzheimer's & Dementia | |
| Alzheimer's Association | The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease by advancing of research; enhancing care and support for all affected; and reducing the risk of dementia through promoting brain health education. Our vision is a world without Alzheimer's. info@alz.org 800-272-3900 |
| The Association for Frontotemporal Degeneration (AFTD) | The Association for Frontotemporal Degeneration (AFTD) is a not-for-profit organization whose mission is to advocate for people confronting frontotemporal degeneration (FTD). Our goals are to promote public awareness, provide information, education and support to people diagnosed with FTD, and their families, educate health professionals, and support research for treatments and a cure. info@theaftd.org 866-507-7222 |
| Bone Marrow Transplantation | |
| Blood & Marrow Transplant Information Network (BMT InfoNet) | Providing resource information and emotional support to patients and their loved ones before, during and after a bone marrow, stem cell or cord blood transplant. |
| National Bone Marrow Transplant Link | A nonprofit organization whose mission is to help patients, caregivers, and families cope with the social and emotional challenges of bone marrow/stem cell transplant from diagnosis through survivorship by providing vital information and personalized support services. Visit the web site for information about programs and resources (publications, including the Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, can also be downloaded for free). Cindy S. Goldman, MEd, LPC, NCC cindygoldman@nbmtlink.org 248-358-1886 |
| Brain Injury and Tumor | |
| American Brain Tumor Association | Founded in 1973, the American Brain Tumor Association (ABTA) was the first national nonprofit organization dedicated solely to brain tumors. For nearly 40 years, the ABTA has been providing comprehensive resources that support the complex needs of brain tumor patients and caregivers, as well as the critical funding of research in the pursuit of breakthroughs in brain tumor diagnosis, treatment and care. abtacares@abta.org CareLine: 800-886-ABTA (2282) |
| BrainLine.org | A multimedia project offering information and resources about preventing, treating, and living with TBI. BrainLine serves anyone whose life has been affected by TBI. That includes people with brain injury, their families, professionals in the field, and anyone else in a position to help prevent or ameliorate the toll of TBI. info@brainline.org |
| Children’s Brain Tumor Foundation | Founded in 1988 by dedicated parents, physicians and friends. Children’s Brain Tumor Foundation’s mission is to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors. info@cbtf.org 866-228-4673 |
| Cancer | |
| My Cancer Circle | My Cancer Circle is a free, private support community for caregivers of people facing cancer. My Cancer Circle communities have access to all of the Lotsa Helping Hands technology features including Message Boards, a Photo Gallery, a Vital Information section for storing information and a Well Wishes wall for posting thoughts to the family. And, through the collaboration with CancerCare, My Cancer Circle provides resources for every community to benefit not only the caregiver and patient but also the volunteers who are helping. CancerCare resources include counseling services, support groups and educational workshops. |
| The Kidney Cancer Association | The Kidney Cancer Association (KCA) is a charitable organization made up of patients, family members, physicians, researchers, and other health professionals globally. It is the world's first international charity dedicated specifically to the eradication of death and suffering from renal cancers. It is also by far the largest organization of its kind, with members in more than 100 countries. We fund, promote, and collaborate with the National Cancer Institute (NCI), American Society for Clinical Oncology (ASCO), American Urological Association (AUA), and other institutions on research projects. We educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels in the United States and Globally. office@kidneycancer.org 800-850-9132 |
| Cancer Support Community | The Cancer Support Community provides emotional support, education and hope to anyone affected by cancer. Services are available through a network of community-based centers, hospitals, and community oncology practices and online. help@cancersupportcommunity.org 888-793-9355 |
| Colon Cancer Alliance (CCA) | The CCA website offers answers to the complex questions frequently asked by those affected by colon cancer including information about screening, treatment, survivor stories, and quality of life and financial issues. info@ccalliance.org 877-422-2030 |
| Living Beyond Breast Cancer | A comprehensive and easy to navigate website providing information and resources to women affected by breast cancer, their family members, caregivers, friends and healthcare providers. Kevin Gianotto kevin@lbbc.org |
| Dana Farber Cancer Institute | Dana-Farber's website provides information about specialized treatment and compassionate care for adults and children with cancer, as well as the latest in cancer research breakthroughs. Carolyn Grantham carolyn_grantham@dfci.harvard.edu |
| Testicular Cancer Society | The Testicular Cancer Society is a 501(c)(3) non-profit organization to raise awareness for the most common form of cancer in men age 15-35. We are dedicated to increasing awareness and education about the disease and providing support for fighters, survivors and caregivers. |
| 4th Angel Mentoring Program | A national, free, non-profit organization that matches patients and caregivers with trained cancer survivor/caregiver volunteers for a phone or email relationship. We strive to match based on a similar diagnosis, age range, gender, common struggles and similar interests. Jamie Kabat BSN, MSN 4thangel@ccf.org 866-520-3197 |
| Association of Oncology Social Work | The Association of Oncology Social Work (AOSW) is a non-profit, international organization dedicated to the enhancement of psychosocial services to people with cancer and their families. Created in 1984 by social workers interested in oncology and by existing national cancer organizations, AOSW is an expanding force of psychosocial oncology professionals. |
| Cancer.net | The American Society of Clinical Oncology’s patient information web site, Cancer.Net, provides timely, oncologist-approved information to help patients and families make informed health care decisions. Patient Resource Helpline (does not give medical advice) 888-651-3038 contactus@cancer.net |
| CancerForward | CancerForward: The Foundation for Cancer Survivors is a nonprofit web-based networking and educational resource for cancer survivors, their families, friends and caregivers. We're here for survivors of all cancer types and all ages...embracing those living with, through and beyond a cancer diagnosis, along with their family members, friends and caregivers. |
| Chemo Care | Chemocare.com is a website designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends. We have approximately 1 million visitors per month! |
| CURE Today | Curetoday.com is CURE magazine’s online destination for cancer patients, survivors and caregivers. CURE is a free publication that combines science with humanity making cancer understandable. editor@curetoday.com |
| CureSearch for Children’s Cancer | An online resource for patients, families, and their support systems. The website provides up-to-date information about the various types of children’s cancer; research trials; descriptions of tests, procedures, and treatments; and information to help families manage the emotional aspects of caring for a child with cancer. info@curesearch.org 800-458-6223 |
| Debbie's Dream Foundation: Curing Stomach Cancer (DDF) | Debbie's Dream Foundation: Curing Stomach Cancer is a 501(c)(3) non-profit organization dedicated to raising awareness about stomach cancer, advancing funding for research, and providing education and support internationally to patients, families, and caregivers. DDF seeks as its ultimate goal to make the cure for stomach cancer a reality. |
| Patient Resource Cancer Guide | The Patient Resource Cancer Guide was created to empower and prepare newly diagnosed and newly restaged cancer patients to become their own advocates. To order a free copy, find information and resources please visit the web site. Debby Easum deasum@patientresource.net |
| Sharsheret | Sharsheret, Hebrew for "chain" is a national non-profit organization supporting young Jewish women and families facing breast cancer at every stage—before, during, and after diagnosis. We help women and families connect to our community in the way that feels most comfortable, taking into consideration their stage of life, diagnosis, or treatment, as well as their connection to Judaism. We also provide educational resources, offer support to those at high risk of developing breast cancer or ovarian cancer, and create programs for women and families to improve their quality of life. To learn more about Sharsheret, please visit www.sharsheret.org, or call 866.474.2774. |
| The Farber Center for Radiation Oncology | The Farber Center represents a warm alternative to the sterile and often daunting hospital environment without compromising quality of medical care and we accept most insurance plans. Every patient gets their doctors cell phone number and email address so they have access to their doctors 24/7. Tanya Tohill-Farber tanya@thefarbercenter.com |
| The Max Foundation | An international nonprofit dedicated to improving the lives of people with blood and rare cancers worldwide. Their helpline provides free services of advocacy, emotional support and informational referrals. Erin Schwartz erin.schwartz@themaxfoundation.org |
| WhatNext | Developed with participation from the American Cancer Society, WhatNext.com is an online cancer support network that instantly connects people, based on a specific diagnosis, to highly relevant peers and resources. contactus@whatnext.com |
| Antiphospholipid Antibody Syndrome | |
| APS Foundation of America, Inc. | The APS Foundation of America, Inc. is the leading US nonprofit health agency dedicated to bringing awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. |
| Caregiving | |
| National Family Caregivers Association | National Family Caregivers Association (NFCA) is the nation’s leading family caregiver organization working to improve the quality of caregivers’ lives. Addressing the common needs and concerns of all family caregivers, regardless of their loved one’s age or diagnoses, NFCA provides education, support and advocacy to build the confidence and capability of family caregivers and remove the barriers that make family caregiving so much harder than it needs to be. NFCA will always be known as the organization that put a face on family caregiving and brought it to the attention of the public. info@thefamilycaregiver.org 301-942-6430 |
| ARCH National Respite Network and Resource Center | Publications, webinars, guidebooks, fact sheets and start up manuals can be accessed through the ARCH website. For family caregivers and other consumers, the ARCH website includes information on how to find, evaluate and pay for respite services through the respite locator service. |
| Family Caregiver Alliance | Family Caregiver Alliance is a voice for Caregivers. Our pioneering programs -- information, education, services, research and advocacy -- support and sustain the important work of families nation wide caring for loved ones with chronic, disabling health conditions (including Alzheimer's, Parkinson's, stroke, ALS and Traumatic Brain Injury.) Michelle Venegas mvenegas@caregiver.org |
| Well Spouse Association | We are a peer-to-peer support network for spousal caregivers. info@wellspouse.org 800-838-0879 |
| Leeza's Place | ‘A Place for Family Caregivers’; a community gathering place and resource center committed to providing free programs to educate, empower and energize family caregivers taking care of a loved one with a memory disorder or chronic illness. Katiani Presotto info@leezasplace.org 954-862-2218 |
| CareNovateMag.com is a free social health platform that provides caregivers, sandwich generations, baby boomers & chief household officer with health, caregiving news & medication literacy insights. info@carenovate.com |
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| American Association of Caregiving Youth | A national resource for the support of children and teens who provide care for family members who are ill, injured, elderly or disabled. It is also a site for parents, professionals and the public to gain information to support these otherwise hidden providers of the health care system so that caregiving youth can complete their education, be healthy and become tomorrow’s productive adults. Dr. Connie Siskowski connie@aacy.org |
| Caregiver's Survival Network | We're an online community dedicated exclusively to the welfare of caregivers of any and all physical or mental debility. We offer a robust venue for caregivers to share experiences, find critical resources, minimize and cope with stress, and effectively combat the isolation and exhaustion of providing chronic care through a personal network of peers who are always available. |
| Caregivers' Monday | Caregivers’ Monday, an initiative of the nonprofit Monday Campaigns, aims to remind caregivers that least on Mondays, they should take some time out for themselves. Cherry Dumaual cdumaual@mondaycampaigns.org 212-991-1056 |
| Careliving Community | Careliving Community is an online network for caregivers of stroke survivors to connect, share stories, discuss issues and support one another. Topics range from self-care and “me” time to caregiver depression and anger. 1-800-787-6537 |
| Caring.com | Caring.com helps individuals find local eldercare resources, make better decisions, save time and money, and feel less alone -- and less stressed -- while caring for aging parents, spouses and other loved ones. support@caringinc.zendesk.com |
| Elder Decisions®, a division of Agreement Resources, LLC | Elder Decisions® is a national leader in helping families resolve disputes around caregiving, living situations, trusts and estates. We provide: Mediation for families; Conflict Coaching for individuals and groups; and Training for mediators and eldercare professionals. Our partners recently published “Mom Always Liked You Best: A guide for resolving family feuds, inheritance battles & eldercare crises.” Crystal Thorpe crystal@ElderDecisions.com 617-621-7009 x24 |
| GiveForward | GiveForward provides personalized fundraising pages and coaching that empower friends and family to answer the question "What can I do to help?" when a loved one is in need. Cate Conroy Cate@GiveForward.com 312-322-1200 |
| Massachusetts Lifespan Respite Coalition | The Massachusetts Lifespan Respite Coalition provides information and resources to any family caregiver throughout the Commonwealth regardless of age or disability of the care recipient. The mission of our organization is to promote and support access to quality respite care options that enhance the lives of individuals and families with special needs throughout the lifespan. We are currently working on a number of ongoing initiatives that includes increasing awareness of family caregivers and the need for respite, funding, training of respite workers and outreach to families and providers. |
| Sally Abrahms' AARP Caregiving Blog | Sally Abrahms is a long-time contributor to AARP with both a personal and professional interest in caregiving. She covers aging and boomers and has written for TIME, Newsweek, The New York Times, and the Huffington Post, among others. |
| The Caregiver Space | At The Caregiver Space, you'll find a community who understands, a safe space to share, comfort and relief. Sharing honestly with other caregivers helps us let go of guilt, stress, anger and fear. Here, we are a community that knows just what you mean. |
| Community Resources | |
| The Community Tool Box | The Community Tool Box is a global resource for free information on essential skills for building healthy communities. It offers more than 7,000 pages of practical guidance in creating change and improvement. toolbox@ku.edu |
| Creutzfeldt-Jakob Disease | |
| Creutzfeldt-Jakob Disease Foundation | Our main purpose remains focused on offering support, information and education. The CJD Foundation is concerned about the complexity of issues surrounding this brain disease. Our philosophy is to be proactive by establishing collaborations and linkages, communicating with family members, researchers, physicians and political representatives and informing the broader community about CJD. Our support mechanism includes a national toll free HelpLine, a comprehensive pamphlet, a series of fact sheets, an informative and user friendly website, a professionally produced series of educational DVD’s and an annual conference to bring together families and researchers. |
| Disabilities | |
| One Place for Special Needs | Get practical information to help your child at home, school and the community. Find thousands of disability resources, programs and services. info@oneplaceforspecialneeds.com |
| General Health | |
| National Health Council | The National Health Council is the only organization of its kind that brings together all segments of the health care community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. Made up of more than 100 national health-related organizations, its core membership includes 50 of the nation’s leading patient advocacy groups, which control its governance. info@nhcouncil.org 202-785-3910 |
| BrightFocus Foundation | BrightFocus Foundation is a nonprofit organization supporting research and providing public education to help eradicate brain and eye diseases, including Alzheimer’s disease, macular degeneration, and glaucoma. We are working to save mind and sight. info@brightfocus.org |
| National Women’s Health Resource Center | The nation’s leading nonprofit health information source offers one stop for all women’s health and wellness information from heart disease and breast cancer to pregnancy, fertility, fitness and nutrition – and everything in between. info@healthywomen.org |
| Huntington's Disease | |
| Huntington’s Disease Society of America | HDSA is the largest non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s disease through research, care, education and advocacy. |
| Lung Disease | |
| American Lung Association | Now in its second century, the American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease. With your generous support, the American Lung Association is “Fighting for Air” through research, education and advocacy. info@lung.org 800-LUNG-USA |
| Mesothelioma | |
| Mesothelioma.com | The Mesothelioma Cancer Alliance is dedicated to serving mesothelioma victims and their families. |
| Military | |
| Wounded Warrior Project | The mission of Wounded Warrior Project is to honor and empower wounded warriors. Its purpose is to raise awareness and to enlist the public’s aid for the needs of injured service members, to help injured servicemen and women aid and assist each other, and to provide unique, direct programs and services to meet their needs. info@woundedwarriorproject.org 877-TEAM-WWP (832-6997) |
| Gary Sinise Foundation | The Gary Sinise Foundation serves our Nation by honoring our defenders, veterans, first responders, their families, and those in need. They do this by creating and supporting unique programs designed to entertain, educate, inspire, strengthen, and build communities. contact@garysinisefoundation.org |
| Adopt A US Soldier | Adopt A US Soldier is a non-profit organization that seeks volunteers to help show the brave men and women fighting for our freedom that their sacrifices will not go unnoticed. It connects supportive civilians with deployed troops and offers a channel by which to communicate encouragement and express gratitude to those brave men and women serving in the United States Armed Forces. |
| Blinded Veterans Association | Established in 1945 by combat-blinded veterans returning from World War II and chartered by the U.S. Congress in 1958, the Blinded Veterans Association (BVA) represents and promotes the welfare of America’s blinded veterans and their families. BVA locates blinded veterans who need assistance and guides them through the rehabilitation process. Details about BVA programs are located on the organization's website. |
| Disabled American Veterans | DAV empowers veterans to lead high-quality lives with respect and dignity. It is dedicated to a single purpose: fulfilling our promises to the men and women who served. DAV does this by ensuring that veterans and their families can access the full range of benefits available to them; fighting for the interests of America’s injured heroes on Capitol Hill; and educating the public about the great sacrifices and needs of veterans transitioning back to civilian life. DAV, a non-profit organization with 1.2 million members, was founded in 1920 and chartered by the U. S. Congress in 1932. Learn more at www.dav.org. |
| Make the Connection | Make the Connection provides personal video testimonials and resources to help Veterans discover ways to improve their lives. The site also provides informational resources on mental health conditions such as PTSD and depression, and symptoms of problems such as drug and alcohol abuse. |
| National Military Family Association | The National Military Family Association provides families of the seven Uniformed Services with information, work to get them the benefits they deserve, and offer programs that improve their lives. info@militaryfamily.org |
| Operation We Are Here | Operation We Are Here is a resource HUB for the military community and military supporters. We offer a clearinghouse of resources for the military community, practical insights in caring for the military community, the ONLY interest-based list for military supporters, and much more. The mission of Operation We Are Here is: to create an awareness of the challenges of the military community, to offer practical suggestions to churches, communities and individuals on how to support and encourage the military community, to provide a comprehensive list of resources for the military community and its supporters. |
| Multiple Sclerosis | |
| National Multiple Sclerosis Society | The National MS Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing direct programs and services that help people with MS and their families move their lives forward. |
| Muscle & Neuromuscular Disease | |
| Muscular Dystrophy Association | MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education. mda@mdausa.org 800-572-1717 |
| Parenting | |
| Parenting With Cancer | ParentingWithCancer provides support and information for parents with cancer and the people who love them. Jen Singer jensinger@mommasaid.net |
| TwinsTalk | TwinsTalk is the award-winning gathering place for parents of twins and multiples with wisdom from the true “experts” in this field -- parents like you! Susan Heim susan@twinstalk.com |
| Parkinson's Disease | |
| American Parkinson Disease Association | APDA is the nation's largest grassroots Parkinson's organization. Volunteer chapters raise awareness and funds for research. I&R centers provide patient/caregiver services and physician referrals, educational materials and programs. Support groups address the needs of patients, families, the newly diagnosed, young onset, and caregivers. The APDA National Young Onset Center is the country's only full-time center addressing the specific challenges of young people with PD. apda@apdaparkinson.org 800-223-2732 |
| American Parkinson Disease Association, Inc. /APDA National Young Onset Center | The APDA National Young Onset Center focuses on developing education and support services that address the unique needs of young people with Parkinson's disease, their family members and friends as well as their healthcare team. apda@youngparkinsons.org 1-877-223-3801 |
| National Parkinson Foundation | Founded in 1957, the National Parkinson Foundation (NPF) is the only organization with a singular focus of improving the quality of Parkinson’s care through research, education and outreach. Our user friendly website offers patients, caregivers and professionals the resources needed to improve the quality of Parkinson’s care. helpline@parkinson.org 1-800-4PD-INFO 1-800-473-4636 |
| Patient Resources | |
| Patient Airlift Services (PALS) | Patient Airlift Services (PALS) is a 501c3 non profit that arranges FREE Air Transportation for individuals who are in need of diagnosis, treatment, transplantation or follow up. Although our primary area of coverage is in the Northeastern U.S. we can link with or refer to similar organizations that allow for National coverage. |
| Spinal Cord Injury | |
| Christopher & Dana Reeve Foundation | The Christopher & Dana Reeve Foundation is committed to funding research that develops treatments and cures for paralysis caused by spinal cord injury and other central nervous system disorders. The Foundation also vigorously works to improve the quality of life for people living with disabilities through its grants program, Paralysis Resource Center and advocacy efforts. infospecialist@ChristopherReeve.org |
| FacingDisability For Families Facing Spinal Cord Injuries | Facing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. Info@facingdisability.com |
| National Spinal Cord Injury Association | The National Spinal Cord Injury Association (NSCIA) was founded in 1948 to improve the quality of life of all people living with spinal cord injuries and disorders (SCI/D) with active-lifestyle information, peer support and advocacy that empower individuals to achieve their highest potential. Bill Fertig bfertig@spinalcord.org 800-962-9629 |
| Stroke | |
| National Stroke Association | National Stroke Association’s mission is to reduce the incidence and impact of stroke by developing compelling education and programs focused on prevention, treatment, rehabilitation and support for all impacted by stroke. The organization’s website provides a host of information, webinars, brochures, fact sheets, videos, stories and more for stroke survivors, caregivers and others affected by stroke. 1-800-STROKES (787-6537) |
| Stroke-Network | Stroke-Network.com is dedicated to providing pertinent and practical information on rehabilitation and recovery from a stroke. New articles uploaded daily covered all the different topics of life after stroke, from physical rehabilitation to financial planning. A special section for Caregivers provides information on simplifying daily tasks and facilitating recovery. |
