Assistive Technology Week
August 14th- 18th
We are thrilled to announce we will be hosting our 4th Assistive Technology (AT) Week starting August 14th-18th! We encourage patients, families, caregivers, and medical professionals to learn more about the power of assistive technology. Our focus this year will be on AAC/AT overview, eye gaze devices, ADLS, and more!
Each day, therapists and representatives from different companies will give presentations in the morning at 11am and we will replay them in the afternoon at 3pm on Zoom. Please see the schedule below! Monday August 14th: Assistive Technology/AAC Overview with Lisa Bruening
Tuesday August 15th: EyeTech Digital Systems with Sean Harrison
Wednesday August 16th: Voiceitt, an app for people with non-standard speech with Dr. Rachel Levy
Thursday August 17th: Tips and Tricks for Activities of Daily Living with Michelle Gosnell
Friday August 18th: Inclusive Technology - Meet the Skyle, eye tracking for iPad Pro with Nigel Wallace
You can join via Zoom at ZOOM LINK HERE or you can watch live in our Facebook Group HERE! If you can’t make the presentations, don’t worry, we will upload them to our YouTube channel, and you can watch them at any time.
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Chapter Events
Our Chapter and third-party hosted events provide opportunities to #ChallengeALS: from raising awareness of ALS, to fundraising for our Chapter to support our services, these opportunities allow us to gather, connect, and fight ALS together.
Walk to Defeat ALS
Register for the Walk to Defeat ALS in your area TODAY!
Save the Date- Dine to Defeat an Evening of Hope
Volunteer with Us!
We cannot imagine our work without volunteers. Thank you for your time, your generosity, and your unwavering commitment to our mission. There’s always a way to pitch in! Learn more about easy ways you can volunteer: Volunteer Interest Form
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Advocacy
State Session and Summer Recap:
Earlier this year, Virginia and Maryland were in the 2023 legislative session where each Governor and lawmakers convened in the state to review state budgets and introduce and pass legislative initiatives. Many of these impact the lives of people living with ALS. Here is a review of a few these bills:
- In Maryland,
- we’ve continued to get commitment from the state to provide $500,000 for the FY24 fiscal year to provide ALS Care Services to people living with ALS. This includes Quality of Life Grants, Durable Medical Equipment, Assistive Technology, and so much more. We are grateful to the legislature and the Governor for this continued funding!
- In addition to the state funding, we supported legislation that passed the General Assembly and was signed into law by Governor Moore. These bills include creating a Rare Disease Advisory Council in the state of Maryland, requiring insurance coverage for Biomarker Testing, as well as prior authorization reform.
- Finally, the ALS Association spearheaded and led the effort of Maryland SB212/HB155, the Genetic Testing Protection Act, which would have prohibited life, long-term care, and disability insurers from charging higher premiums or denying coverage based on genetic testing results. We led this first-of-its kind legislative effort in Maryland and continue coalition building and legislative educational efforts, setting the stage for successful passage and enactment in the near future!
- In Virginia,
- Lawmakers are still convening on the state budget, which includes an amendment to ALS Care Services. This money will go to services that directly impact the families that we serve and continue to fulfill our mission.
- As we continue to work on getting ALS Care Services in the state budget, there were a few bills that passed the legislature and signed by Governor Youngkin. These bills are: Medigap Legislation (HB 1640/SB 1409), which prohibits Medigap issuers from denying coverage or charging Medicare enrollees under 65 more than enrollees over 65 years of age; and Genetic Testing Protections (SB1087), that protects consumer’s privacy regarding their genetic testing results in direct-to-consumer genetic testing.
- In the District,
- The city council has passed and enacted the Copay Accumulator Amendment Act, which would help district residents with lowering the high cost of specialty prescription drugs. They are also looking to pass the Prior Authorization Reform Amendment Act. Currently, the prior authorization process poses significant obstacles and delays for ALS patients, impeding their access to critical treatments and therapies.
- We are currently looking for D.C. residents who have been impacted by ALS themselves or a family member. If you or someone you know would be interested in participating in advocacy in the District, please contact Lindsay Gill, Managing Director of Advocacy, at [email protected].
August is Advocacy Action Month, and we are working with grassroots ALS advocates from across the United States will engage with key members of Congress who are decision makers on federal appropriations for ALS research at the Department of Defense, National Institutes of Health, Food and Drug Administration, and Centers for Disease Control. They will share their personal experience with ALS and urge members of Congress to increase funding of critical research to find new treatments and a cure. To stay up to date on events and how to participate in Advocacy Month, please click here to sign up for our kick-off event!
As we continue to prepare for the 2024 legislative session, we are looking for advocates and volunteers to participate in legislative hearings on a variety of topics and pieces of legislation. If this is something you are interested in, please reach out to Lindsay Gill, Managing Director of Advocacy, at [email protected].
Please click here to sign up and to review our issues, learn about your elected officials, and take action in support of individuals living with this disease.
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ALS Support Groups
Dealing with ALS is physically, emotionally and financially devastating. ALS Support Groups provide a caring, supportive, and open environment for people to gather, connect, and talk with one another. These groups are open to people living with ALS, their families, caregivers and friends. They provide everyone with opportunities to establish a network of valuable resources and sustained support. Our Chapter offers many support groups for both patients and caregivers. Click here for a complete list. Each meeting and will have speakers on relevant topics combined with time for attendees to share information and provide feedback to one another.
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Donate Equipment
The ALS Association DC/MD/VA Chapter greatly appreciates donations of durable medical equipment (DME), respiratory equipment, and communication devices for use in our Equipment Loan Program. The Program offers temporary loaner equipment, including speech generating devices, to area residents with a verified diagnosis of ALS who are uninsured, underinsured, who cannot access their insurance (while in a nursing home or hospice) or who are waiting for insurance approval.
For equipment donations, please contact us at 301-978-9855.
We will provide an acknowledgment letter to each donor for tax purposes once the donation is picked up by the DME companies that store and maintain our equipment throughout the state, and NuMotion.
Numotion graciously donates their time and services to help us fulfill our Equipment Loan Program, providing temporary loaner equipment to area residents in need with a verified diagnosis of ALS.
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Donate Today!
Your gift will help The ALS Association DC/MD/VA Chapter support research to find a cure for ALS and provide much-needed services to people living with ALS and their families. By making your gift today, you will help sustain hope in thousands of people affected by ALS. To make an online donation, please click on the button below.
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Connect With Us On Social Media
To get the latest updates regarding what is happening in Florida to treat, care for, and fight ALS, make sure to follow us on all of our social media channels.
