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ALS Association Greater Sacramento Chapter
916-979-9265
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Organization Details
FUNDRAISE
We must take a stand against the imminent threat of COVID-19 to our ALS community. When a common cold is a detriment to the health and safety of a person with ALS, a virus like COVID-19 puts our entire community at risk. We made a promise to the hundreds of people impacted by ALS in Northern California and we must rise to keep them safe and maintain a sense of hope in this time of crisis. Please help us to support our ALS Emergency Relief fund, which will provide targeted financial aid, virtual support and telemedicine programs, expanded care service staff hours, sanitary supplies and groceries, and more to over 600 people impacted by ALS.

Programs

Description
Funds from Big Day of Giving will help to purchase critical supplies that help families living with ALS stay safe, germ-free, and well stocked in their homes. Chapter staff have been working around the clock to source and deliver water, cleaning supplies, hand sanitizer, and groceries to the porches of families we serve. These items have become vital lifelines and we must continue to support the supply needs of people impacted by ALS during the COVID-19 crisis.
Budget
$10,000
Program Successes
Distilled water is a vital lifeline for the ALS community that has been impacted by supply chain shortages. Those living with ALS use it to run their ventilators and bi-pap machines, which they rely on to breathe. Many families contacted the Chapter expressing their concern that there was no distilled water to be found. Chapter staff took action by crowd-sourcing water supplies through our social media channels and have so far dropped off over 50 gallons of distilled water to the porches of families who need it.
Description
The Chapter is offering financial support that meets the unique needs of families living with ALS now and when the COVID-19 crisis ends. In normal times, it costs approximately $200,000 annually to care for someone with ALS. We want to ensure that this crisis does not cause further financial harm to families living with ALS by assisting with: grocery & supply purchases and delivery, utility bills, in-home respite care, durable medical equipment and speech communication device purchases, and medical copays.
Budget
$65,000
Program Successes
- In 2019, the Chapter's grantmaking program PALS 4 Life funded over 638 hours of professional in-home respite care.
- In 2019, our grantmaking programs have benefited 50 individuals across the Greater Sacramento region with over $50,000 of direct financial support. These families received grants in support of in-home caregiving, emergency transportation, and durable medical equipment.

Description
The Greater Sacramento Chapter manages an on-site loaned durable medical equipment (DME) program, available to anyone registered with the chapter and living with ALS. The Chapters' loan program is designed to provide equipment to patients when insurance does not cover, when patients are unable to pay their co-payment, or when there is a lag between need, insurance coverage approval, and delivery of equipment. Items such as wheelchairs, transfer devices, shower chairs, lift chairs, oscillating beds and augmentative communication devices provide independence, comfort, and the ability for people living with ALS to communicate with their loved ones.

Throughout the duration of the COVID-19 crisis, we remain committed to safely supplying our community with the equipment they need. We continue to partner with local vendors to provide safe and sanitary porch drop-offs for critical DME needs and continue to manage the loan closet at the Chapter Resource Center. Our care services team are offering virtual care consultations to discuss equipment needs and schedule drop-offs.
Budget
$47,897
Program Successes
- Since its inception in 2010, the Durable Medical Equipment Loan Program has provided over 2,000 pieces of equipment.
- In 2019, 260 items went out to more than 90 people diagnosed with ALS in the Greater Sacramento region.
- Last year, our loan program provided over $500,000 worth of durable medical equipment to the ALS community, at no charge.
Description
Support Group Meetings provide an opportunity for patients, caregivers, and their families to give and receive emotional support, and to share information and practical experience. All Support Group Meetings are professionally facilitated by the Greater Sacramento Chapter care services team, offering a safe and welcoming environment for the community to network, foster, and build relationships with peers and professional service providers.

Throughout the duration of the COVID-19 crisis, protecting our community's mental health and building a supportive network is more important than ever. Support group meetings provide a sense of hope and connection that helps the ALS community weather daily battles. These must continue uninterrupted, and through the use of technology and web-based platforms like Zoom, the Chapter will continue to facilitate "face time" between our staff, patients, and caregivers. We have also added the opportunity for patients and caregivers to access virtual individual & group therapy sessions with a licensed professional therapist for the duration of the crisis.

Program's objectives:
- To provide monthly support groups that meet the needs of both patients and caregivers.
- To provide access directly or indirectly (web access) to any patient or caregiver.
- To offer helpful and relevant support and information to the ALS community.
- To build and foster a peer to peer support system within the ALS community.
- To offer skills to cope with challenges.
- To improve understanding of the disease and one's journey with it.
- To increase quality of life for families affected by ALS.
- Ensure consistent access to care throughout our communities served.
Budget
$58,000
Program Successes
- In 2019, the Greater Sacramento Chapter held 65 monthly Support Group Meetings across Northern California.
- In 2019, the Greater Sacramento Chapter served patients and caregivers, and their family members 612 times through Support Group Meetings.
- 95% of patients report Support Group Meetings as one of the most important programs offered by the Greater Sacramento Chapter, drastically improving quality of life.
- 95% of patients reported a reduction in isolation, distress, depression and anxiety and an increase in hope.
Description
The Chapter's augmentative communication device program loans critical communication devices to people living with ALS so they can continue to interact with their caregivers, loved ones, and society. The loan closet houses everything from the most basic devices like boogie boards , to high-tech Tobii Dynavox computers with eye gaze technology. Our array of equipment ensures that everyone has access to a device that works for them, regardless of their stage of progression. The augmentative communication device program also houses smart tech devices like the Amazon Alexa, Bluetooth accessories, and more so that people with ALS can control their home environment through their phones, computers, and speech devices.

Access to communication is especially important during the COVID-19 crisis when the stakes are high for caregivers and isolation leaves little room for interaction with the outside world. Chapter staff continue to work closely with families and clinical care staff like Speech Language Pathologists to evaluate communication needs and provide the appropriate device.
Budget
$50,000
Program Successes

Description
The multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional, and ALS Association Chapter Liaison. The ALS Association Greater Sacramento Chapter collaborates with two Certified Centers of Excellence in the Greater Sacramento region, UC Davis Health and Forbes Norris ALS/MDA. Both UC Davis and Forbes Norris have a care services representative from the Greater Sacramento Chapter in attendance at every clinic, who ensure a seamless service delivery of care and support to those living with ALS, and their families.

During the COVID-19 crisis, we are partnering with clinic staff to offer virtual telemedicine clinic appointments. Those living with ALS need access to multidisciplinary clinical care, even when meeting with their doctors in-person risks their health during the COVID-19 crisis. To keep patients safe, the Chapter is working to supply and install technology in patient's homes that will give them access to virtual medical appointments with physicians and clinical care teams.

Program Objectives:
1. Ensuring awareness of all programs and services available to them through their local chapter.
2. Confirming all assessed needs are documented, communicated and coordinated in conjunction with the correct clinician.
3. Coordinating all assessed durable medical equipment and speech communications prescriptions with appropriate vendors, while ensuring the safety of the patients and caregivers is adequately met through the loaned durable medical equipment program offered by the The ALS Association Greater Sacramento Chapter.
4. Provide emotional support to patients and caregivers, and their families.
5. Improve the quality of life for the person experiencing ALS.
Budget
$40,000
Program Successes
- In 2019, 91% of the patients served, attended an ALS Multi-Disciplinary Clinic.
- In 2019, the Greater Sacramento Chapter funded over $125,000 to our Multidisciplinary Clinics.
- Multidisciplinary clinical care is the only known method to extend the life of a patient battling ALS.