About Community Health Charities of Nebraska. Community Health Charities of Nebraska. Member Charity Programs & Services Guide

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1 About Community Health Charities of Nebraska Community Health Charities of Nebraska (CHC-NE) is a fundraising family of 19 Nebraskabased affiliates of nationally recognized health charities dedicated to improving the lives of those affected by a chronic health condition. CHC-NE raises vital funds through workplace giving campaigns, corporate matching funds and foundation contributions to benefit these health charities. Because of our donors, no matter where you are in the state, you can find support when you need it the most our charities are there for you. Community Health Charities of Nebraska Member Charity Programs & Services Guide offering support for those with chronic health conditions across Nebraska Dollars raised each year are distributed to our charities to provide support for those with chronic health conditions as well as family members, friends and co-workers affected by chronic illness. The programs and services listed in this guide are available for all Nebraskans, and our 19 member charities also provide education and advocacy as well as funding for vital medical research to help discover breakthrough treatments and the hope of a cure. In Lincoln, we are proud to partner with United Way of Lincoln and Lancaster County. Gifts made during the annual United Way/CHC Campaign help make the support listed in this guide possible. As you look through this guide, please know that the 19 member charities listed here are available to you should you find yourself in need of support. You may also contact the charity office directly for any questions or assistance you might need or contact the Lincoln office listed below. Lincoln Office: 215 Centennial Mall South, Suite 509 Lincoln, NE / Online:

2 The ALS Association Mid-America Chapter United Cerebral Palsy of Nebraska The ALS Association is leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig s Disease and their families to live fuller lives by providing them with compassionate care and support. 5,600 people are diagosed with ALS every year. The ALS Association Certified Treatment Center of Excellence Clinic at Nebraska Medicine provides a multidisciplinary team that gives patients with ALS a comprehensive evaluation and treatment plan Family support services including support groups for people with ALS and caregivers and the coordination of circles of care for families Educational materials and seminars for families Training and information for professionals caring for ALS patients Consultation on equipment plus free medical equipment loan including walkers, wheelchairs and communication devices Second largest funder of ALS medical research Information: Cerebral palsy is a nonprogressive disorder of the motor control areas of the developing brain. It is caused by damage to one or more specific areas of the brain. 1 in 23 children has been diagnosed with cerebral palsy. 7,100 Nebraska children under 5 have a developmental condition that they have received diagnostic services or therapy for and/or a long-lasting condition that interferes with walking, running or using stairs. Referral Network Advocacy Tech Tots/Tools Technology Library provides adapted toys and devices to children with developmental and physical disabilities at no cost to families Family Focus is a series of events designed for the entire family to enjoy peer connections The Computer Kids program provides students with computers and/or software with the necessary adaptations to meet special needs Client Assistance Grants provide limited financial assistance to qualified individuals with a disability Information: Alzheimer s Association Nebraska Chapter The Alzheimer s Association works to eliminate Alzheimer s disease through the advancement of research; provide and enhance care and support for all affected; and reduce the risk of dementia through the promotion of brain health. One in three seniors die with Alzheimer s or another dementia in the United States. 81,000 Nebraskans are affected by Alzheimer s disease. Care consultations for families MedicAlert +Alzheimer s Association Safe Return identification program Caregiver support groups and monthly caregiver education presentations Disease prevention and education 24/7 Information and Referral Helpline Local, state and national advocates for Alzheimer s and other dementia issues Alzheimer s Association TrialMatch online clinical trial locater service Supports research and clinical trials Information: Lincoln Office: 1500 S. 70th St.

3 Nebraska Kidney Association Inc. American Diabetes Association of Nebraska The Nebraska Kidney Association has been helping Nebraska kidney and transplant patients for more than 45 years, working to provide education, programs and services, screening opportunities and advocacy for those affected by kidney disease or organ donation. 16% 20 of Nebraskans are affected by kidney disease. people will die today waiting for a life-saving organ transplant. Emergency financial aid for kidney and transplant patients Patient advocacy for Nebraska kidney, urologic and transplant recipients Professional education programs Organ and tissue donation information Kidney Early Detection Screening (KEDS) free kidney disease screenings at locations around the state Kidney Health and Education Program (KHEP) teaching about kidney function, disease and transplantation Patient information, including resource guide and general education Patient and Family celebration/education day Information: The American Diabetes Association is working to prevent and cure diabetes and to improve the lives of all people affected by diabetes. It funds research to prevent, cure and manage diabetes; delivers programs and services; provides credible information; and gives a voice to those denied their rights because of diabetes. 9.3% of the U.S. population has diabetes. More than 147,000 people in Nebraska have diabetes. Everyday Wisdom Kit is a tool designed to help families of children with Type 1 Diabetes Safe at School program helps children with diabetes at school Living with Type 2 Diabetes (LWT2D) program offers information and support to patients at the moment of diagnosis and throughout their first year with the disease Has provided more than $1.1 million of ADA-funded research in Nebraska since 2005 Free Ask the Expert educational sessions with experts Presentations and educational materials provided at community events about diabetes Stop Diabetes@Work program available Diabetes Busters program presents information about diabetes to fourth graders Information: 888-DIABETE Susan G. Komen Nebraska American Lung Association in Nebraska Susan G. Komen Nebraska works to eradicate breast cancer as a life-threatening illness through research, education, screening and treatment programs. About 1 in 8 U.S. women will develop breast cancer over the course of their lifetime. 24 cases of breast cancer are diagnosed each week in Nebraska. Information and referral to services for breast health or breast cancer Grants for projects in breast health education, breast cancer screening and treatment support services Ongoing support groups and speakers bureau Funding for breast cancer medical researchers Participates in educational outreach programs and activities to promote awareness Information: The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease through education, advocacy and research. 280,000 Nebraskans suffer from lung disease, with the majority living with asthma. #3 Lung disease is the No. 3 killer in the U.S. Provides the latest best practices and resources to patients and doctors about lung disease at the annual LUNG FORCE Expo Better Breathers Club offers ways to better cope with COPD and provides support Camp Superkids for children with asthma Lung Help Line staffed by respiratory therapists, nurses and counselors to answer questions about lung disease and smoking cessation Freedom From Smoking group clinic designed for smokers who are ready to quit; free online Information: 800-LUNG-USA ( )

4 Arthritis Foundation, Heartland Region, Nebraska Nebraska Chapter - National Hemophilia Foundation Leading the fight for the arthritis community, the Arthritis Foundation helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections. 1,800 children in Nebraska suffer from arthritis. 336,000 adults and children in Nebraska are suffering from arthritis. Referrals for rheumatologists and other healthcare professionals for those with arthritis Patient advocacy and medical research Reference lending library and educational materials The Pain in Its Place program gives tools to manage Osteoarthritis (OA) pain Walk With Ease is an exercise program that can reduce pain and improve overall health The Juvenile Arthritis Welcome Kit helps children and families who have been newly diagnosed Juvenile Arthritis Family Conference and other activities for children who have juvenile arthritis Kids Get Arthritis Too support group Camp Spirit provides a summer camp experience for children with arthritis and related conditions Information: The Nebraska Chapter of the National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. 978 Nebraskans have a bleeding disorder. Medical research Lending library Annual Family Education Weekend Certified Hemophilia Treatment Center at UNMC Nebraska Chapter Financial Assistance Program Nebraska Chapter of the National Hemophilia Foundation s (NHF Nebraska) Academic Scholarship Program Parent Information & Networking Group for families of newly diagnosed children ages 0-12 Family camp for those with bleeding disorders Information: Lincoln Office: 215 Centennial Mall South, Suite 512 Brain Injury Alliance of Nebraska Nebraska Hospice and Palliative Care Association The Brain Injury Alliance of Nebraska is the only statewide nonprofit exclusively dedicated to brain injury in our state. As such, we strive to enhance the quality of life for the more than 36,000 individuals living with disabilities caused by brain injury, as well as their families. Every day in Nebraska at least one person dies from a traumatic brain injury. The lifetime costs associated with TBIs in Nebraska was over $ $413 million in Nebraska Concussion Coalition creates statewide awareness for concussion management Nebraska Veterans Brain Injury Task Force educates the community about the unique needs of service members and veterans with brain injury and/or PTSD Resource Specialists provide individualized information, resources and referral services for those dealing with brain injury Statewide brain injury education and outreach Hosts an annual statewide informational and educational conference for professionals and individuals/families dealing with brain injury 11 statewide brain injury support groups Partners with state agencies to provide brain injury education Information: The Nebraska Hospice and Palliative Care Association is a statewide partnership to improve the quality of life for all Nebraskans who have chronic conditions or are near the end of life and to support the various communities who care for them. Hospice provides care for all ages and includes a team of professionals to provide support: a doctor, nurse, social worker, chaplain (if desired), other specialists as needed and volunteers. 50% The number of dying Nebraskans who utilize hospice. Several workshops, classes and webinars provided throughout the year to end-of-life professionals and caregivers Information and resources available to hospice providers and caregivers Annual conference includes educational programs and a trade show; six scholarships are provided. The We Honor Veterans campaign is designed to empower hospice professionals to meet the unique needs of dying veterans Advocacy and outreach Referrals for hospice providers across the state with the Find a Hospice tool on nehospice.org Lending library Information: Lincoln Office: 1200 Libra Drive, Suite 100

5 National MS Society, Mid America Chapter Crohn s & Colitis Foundation of America, NE/Iowa Chapter Multiple sclerosis (MS), an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain and between the brain and body. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving closer to a world free of MS. 3,000 The number of people in Nebraska who are living with MS. Medical research and advocacy Educational and social programs Partners in MS Care is a National MS Society program that recognizes and supports quality MS care by encouraging strong partnerships between MS clinicians and the Society Support Groups and one-on-one peer connections The MSFriends and MSconnection.org programs connect individuals living with MS MS Navigators program provides one-on-one support to provide a comprehensive approach as well as equipment loans Financial assistance program available Referrals to MS Specialty clinics in Nebraska, which provide comprehensive services to improve the quality of health care for people living with MS Information: The mission of the Crohn s & Colitis Foundation of America (CCFA) is to cure Crohn s disease and ulcerative colitis and to improve the quality of life of children and adults affected by these diseases. Information Resource Center (IRC) features free telephone (888-MY.GUT.PAIN), or live web chat access to medical professionals regarding diagnosis, treatment, coping and support resources Support groups Medical research and advocacy Annual Patient and Family Education Symposium Camp Oasis offers medically supervised summer camp for children with Crohn s disease and ulcerative colitis Information: Cystic Fibrosis Foundation - Nebraska Chapter The Nebraska AIDS Project leads the community in the fight to overcome HIV/ AIDS and its stigma through education, support services and advocacy. 2,500 individuals in Nebraska are living with HIV & AIDS. Nebraska AIDS Project Community education and engagement Free HIV testing, STI testing with bilingual capability Education & Outreach to identify and target at-risk populations and serve their needs to get tested HIV and STD risk-reduction programs Mental health services for individuals and family members or partners Case management for people living with HIV Support groups Information: Lincoln Office: 1120 K Street, Suite 100 The Cystic Fibrosis Foundation works to cure cystic fibrosis (CF) and provide all people with CF the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care. 38 The median age of survival for someone with cystic fibrosis. More than 10 million Americans are symptomless carriers of the defective CF gene. Supports a wide range of innovative research programs to discover and develop new and effective CF therapies Compass program helps CF patients find the answers they need on any CF-related questions such as insurance and co-pay assistance, diagnostic testing and legal issues State-of-the-art diagnosis and treatment services are available at the accredited CF Care Center at Nebraska Medicine. Social workers and clinic coordinators are also available at the Care Center Community engagement, volunteer and advocacy opportunities available Referrals to CF family support groups Information: 800-FIGHT-CF ( )

6 JDRF International - Heartland Chapter March of Dimes, Nebraska & Western Iowa Market Type 1 diabetes is an autoimmune disease that strikes both children and adults suddenly. It has nothing to do with diet or lifestyle. There is nothing you can do to prevent it. And, at present, there is no cure. JDRF is the leading global organization funding type 1 diabetes (T1D) research. Our strength lies in our exclusive focus and singular influence on the worldwide effort to end T1D. 40,000 People in the U.S. are diagnosed with type 1 diabetes every year. Leading source of funds and advocacy for type 1 diabetes research worldwide Through the Mentor Family Program, families of newly diagnosed children are paired with a mentor family to provide additional one-on-one support as needed Bag of Hope delivered to newly diagnosed families Youth Ambassador program Support Groups and Family Events Referral to physicians and diabetes educators Educational and informational brochures and lending library Information: Lincoln office: 2120 S. 56th, Suite 206 The March of Dimes works to end premature birth and other problems that threaten our babies. We help moms have full-term pregnancies and healthy babies. If something goes wrong, we offer information and comfort to families. We research the reasons why babies are born too soon or very sick and work on preventions. Nearly 3,000 premature births happen in Nebraska each year. Outreach programs and prenatal education materials and information NICU Family Support Specialist program provides emotional and educational support to families whose babies are in the NICU and to moms on bed rest at two hospitals in Omaha Educational materials and referral Professional education opportunities for medical professionals who specialize in obstetrics and premature birth Patient advocacy and medical research Information: Lincoln office: 315 South 9th St., Suite 214 The Leukemia & Lymphoma Society The mission of The Leukemia & Lymphoma Society (LLS) is to cure leukemia, lymphoma, Hodgkin s disease and myeloma and improve the quality of life of patients and their families. LLS exists to find cures and ensure access to treatments for blood cancer patients. We are the voice for all blood cancer patients and we work to ensure access to treatments for all blood cancer patients. Every three minutes someone in the U.S. is diagnosed with a blood cancer. Patient advocacy Co-pay, transportation and emergency financial assistance programs are offered statewide Medical research Support groups and telephone support First Connection peer-to-peer support program helps newly diagnosed patients Educational programs for patients/caregivers and healthcare providers Information: toll-free Muscular Dystrophy Association of Nebraska Muscular Dystrophy is often used to refer to a group of progressive muscle wasting and neuromuscular diseases that can include: Duchenne MD, Limb-Girdle MD, ALS, Friedreich s Ataxia and Spinal Muscular Atrophy. Muscular Dystrophy can affect people of all ages. Although some forms become apparent in infancy or childhood, others may not appear until middle age or later. 1,000 Nebraskans are living with a nueromuscular disease. Special patient care clinics give individuals access to a nationwide network of some 200 hospitalaffiliated clinics and 40 MDA/ALS research and clinical care centers MDA Clinics provide neurologist consultation with diagnostic services, therapeutic services and rehabilitative follow-up care Free equipment loan program and assistance in repairing equipment for MDA-registered clients Monthly support groups and education Advocacy and medical research grants MDA Summer Camp available at no charge for all children ages 6-17 with a neuromuscular disease Reimbursement for annual flu shots for individuals living with a neuromuscular disease Information: