Newly Diagnosed Resources
We hope that the following resources can help to answer questions about your
ALS diagnosis and provide tools that will allow you to determine next steps.
Learn What Steps You Can Take Now
ALS Research Collaborative (ARC)
ALS TDI's
ALS Research Collaborative (ARC)
allows people with ALS to gain valuable insights about their disease
progression while also contributing to ALS research – all without having to
leave your home. The program is free to participate in and may help you to
make more informed decisions about potential treatments as well as track
whether or not certain interventions are working.
Learn more about the benefits of enrolling in the ARC.
Multidisciplinary Clinics
Getting an appointment at a multidisciplinary clinic (MDC) can be an
important next step for people who are newly diagnosed with ALS. There is
some evidence to support that people with ALS who consistently attend
MDC's can improve their quality of life, possibly prolong their survival,
and reduce hospital admissions. Through these clinics you can meet with a
team of health care professionals specially trained to address the needs
of people living with ALS.
You can search ALS clinics by state at youralsguide.com.
Learn About ALS Treatments and Trials
Treatments and ALS Drugs
There are currently two approved FDA treatments that aim to slow ALS disease
progression. While there are no effective treatments nor cures that halt disease
progression, scientists at ALS TDI and around the world are working hard to
develop therapies for ALS. Learning about current and potential ALS treatments,
as well as ALS drugs that may help with managing symptoms, may be a helpful
step following ALS diagnosis.
You can view unbiased information on ALS treatments and drugs here.
Wondering about alternative treatments?
ALS Untangled is a third-party
organization that reviews alternative and off label treatments (AOTs), with
the goal of helping people with ALS make more informed decisions about them.
ALS Clinical Trials
Following an ALS diagnosis you may want to learn more about ALS clinical
trials. Doing so will ensure that you are aware of any that may be an option
for you, as well as keep you informed on the status of potential treatments.
ALS TDI maintains an unbiased listing of clinical trials and provides
information on all those enrolling worldwide.
To find information on all
ALS clinical trials that are currently enrolling,
browse our clinical trials database.
Do you want to learn more about how clinical trials work? To learn
more about the four phases of clinical trials, read our blog post
here.
Are you newly diagnosed with ALS and looking for help to begin
searching for clinical trials? Watch ALS TDI's recent ALS Town Hall:
Clinical Trial Series Part 1 to learn what steps you can take and
hear other people with ALS talk about their experience with clinical
trials.
Watch Clinical Trials discussion here.
Stay Informed About ALS Research
Research News
At ALS TDI, we aim to keep you informed by providing up-to-date ALS
research news articles. These articles include research at ALS TDI as well
as general ALS research and science news.
You can
browse our ALS Research news articles here.
In addition to our own articles,
ALS News Today is a third-party
organization that publishes frequent articles related to ALS research,
science, and living with ALS.
Get Connected to the ALS Community
ALS Forum
The ALS Forum provides a free virtual platform to connect with other members
of the ALS community. Here you can ask questions or search through existing
threads to find information that is relevant to you.
You can create a free account and join our ALS community forum here.
ALS TDI Emails
Sign up for ALS TDI emails to stay updated on ALS research, learn about
events and programs, and hear stories from the community. In addition to
receiving our monthly newsletter, you can opt-in to receive
updates on clinical trials, events, and new episodes of our Endpoints
Podcast.
You can sign up for ALS TDI emails here.
Contact Us
Contact ALS TDI if you would like one of our team members to reach out
to you directly. We can provide information about ALS TDI, ALS research,
and ALS clinical trials, as well as help to answer questions. While ALS
TDI does not provide patient services, we can help to direct you to third
party organizations that do.
Contact ALS TDI to start a conversation.
Additional Resources
Patient Health & Care
View a list of organizations and resources that can provide more information
about patient care and assistance.
Explore patient care and health resources here.
Research & Clinical Information
View a list of organizations and resources that provide additional
information on research and clinics, and find answers to frequently
asked questions.
Explore research and clinical resources here.
Nutrition Tracking
In addition to tracking your symptoms, taking steps to maintain your weight
can be beneficial following an ALS diagnosis. Researchers and dietitians at
Massachusetts General Hospital have created an
ALS Nutrition app
to help people living with ALS consume the calories they need to maintain
their current weight.
ALS Augmentative Communication Program
The
The ALS Augmentative Communication Program
at Boston Children's Hospital aims to support communication and daily functional
needs for people with ALS. They provide comprehensive augmentative communication
and assistive technology assessments, trials and training to people with ALS from
the time of diagnosis throughout their lifespan.
Roon App and Website
Roon is a free platform for people navigating ALS. Roon consists of short-form
Q&A videos from various ALS experts – including some from ALS TDI! The
app aims to help answer the many questions that come up throughout the ALS
journey.
Learn more and download the app here.
