Chapter Highlights

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Care Services Monthly

 

Here are the highlights for Care Services for the Month of May.

1) Research and Clinical Trials

Biogen and Ionis announced top line phase one study results of investigational drug in C9orf72-associated ALS on March 28th, 2022.

BIIBO78 an investigational antisense olingonucleotide for C9orf72-associated ALS did not show clinical benefit; therefore, the clinical program will be discontinued.

For over a decade, Biogen has committed to advancing ALS research and remains committed to finding deeper understanding of all forms of the disease. This includes developing therapies for all forms of this progressive and fatal neurodegenerative disease. Biogen has supplied important learning to its portfolio of assets for genetic and other forms of ALS, with the goal of increasing the probability of bringing a potential therapy to patients in need. The company has a pipeline of several investigational drugs being evaluated in ALS, including tofersen, BIIB105 and BIIB00.

2) New Patient Packet

There is a booklet in your new patient packet called, “Basic Homecare for ALS patients” The purpose of this ALS guide for patients and families is to provide basic information about home care for people with ALS. The booklet is an introductory guide and should be coordinated with professional medical care. Some of the contents include:

Diet and nutrition

Hygiene

Home care

Physical therapy

Equipment

Recreation

3) Emotional/Spiritual Information

Being diagnosed with ALS often leaves a person with a feeling of loss and being alone. That is why staying connected with other ALS patients and their families is important. In an ALS support group, you will find community, answers to many of your questions, and people who are willing to help you at every stage of your diagnosis. You will also be kept up to date on the latest research and treatments for ALS. It is a safe place where people care and understand what you are going through. For more information on ALS Support Groups, contact your local ALS Association and check out the website listed below.

4) Durable Medical Equipment

Durable Medical Equipment (DME) Available for Loan, at No Cost! Save money and your back. Contact your local Care Service Coordinator at the following link: Contact Us | The ALS Association. Rollators, power wheelchairs, manual and transport wheelchairs, patient lifts, portable ramps, over the bed tables, sit-to-stand lifts, pressure mattresses, and more.

 

Special article

Click here to read an article by caregiver Donna Prosser on "Maintaining Your Independence When Mobility Declines". 

 

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2022 Assistive Technology Week

SAVE THE DATE!

We are thrilled to announce that our chapter will be hosting our third Assistive Technology (AT) Week August 8th-12th.   We encourage patients, families, caregivers, and medical professionals to learn more about the power of assistive technology. 

Each day, therapists/representatives from different companies will give presentations in the morning and we will replay the recordings in the afternoon. These sessions will be broadcasted on our Facebook page, or you can join via Zoom.  

If you have additional questions, please contact Regan Barton at [email protected].

 

 

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Support Groups

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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The ALS Association DC/MD/VA 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.

2022 Spring Events: 

Ride to Defeat ALS Blue Ridge 

The Ride is less than one month away and we have increased our goal due to it's current success! There is still time to register to ride, volunteer or support! Visit www.alsblueridgeride.org. 

(Special message from Board Member Steve Greer)

My Friends & Associates,

I am always humbled by your smiles, prayers, encouragement, and by your support for the Walk to Defeat ALS®. I have also had a lot of help along the way from my faith, wonderful family, friends, and neighbors, and do not walk alone. Like Robert Frost, “two roads diverged in a wood, and I took the one less traveled by, and that has made all the difference”.

Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease, is a rare 100% fatal neurological disorder, with no known cause or cure. Survival timelines are dismal, with most patients losing their battle in three-to-five years from diagnosis. I continue to do better than expected and plan to celebrate my 5th anniversary with gusto later this year.

We are organizing the first annual Blue Ridge Ride to Defeat ALS to drive awareness and financial support for the ALS Association research & programs. We will bring the event from Napa Valley to this beautiful area I/we call home.

  • Cyclists, non-cyclist supporters, sponsors and families are welcome to participate, have some fun, sample great brews and grub (BBQ).
  • Please consider registering on the event site (www.alsblueridgeride.org) so we have an accurate food count & T-Shirt for volunteers & fund-raising participants. If planning to stay overnight, suggest checking hotel room availability.   
  • You can also donate via Facebook and follow us on Instagram, per preference.
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Our ALS community is resilient, committed and determined to create a world without this awful disease. Together we can make a difference by having a direct and local impact in the Charlottesville / Blue Ridge area. Please consider supporting us by donating, joining, or starting a team, or sign up to be a volunteer today.

On behalf of all ALS patients and their families, we appreciate your consideration.

Regards,

Steve Greer

LEARN MORE ABOUT ALL OUR CHAPTER EVENTS!

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Durable Medical Equipment in Store

Donate Equipment to The ALS Association DC/MD/VA Chapter!

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.

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Numotion Logo

 

 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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Fun Ways to Fight ALS

There are several ways to fight ALS through FUNdraising efforts including (but not limited to): shopping, playing games, live streaming, exercising, and SO MUCH MORE. 

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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.

DONATE NOW!

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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.

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