Big thanks Amanda, for compiling this list!

We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

The best resources for finding an ALS drug trial and ALS research opportunities

Many pALS and their families choose to get involved with research either in hopes of slowing down the progression and/or helping find a cure. There are research opportunities for people with sporadic or genetic  ALS. You don’t necessarily have to have ALS to participate! Some studies are in need of people with a predisposition such as a genetic mutation associated with ALS and others need controls to participate. Some reputable sites to help you look for opportunities are below.  

https://clinicaltrials.gov/ is a central database of clinical trials for all conditions, including ALS.

The ALS Association also lists opportunities at

https://www.als.org/research/clinical-trials-for-patients

Specific reputable ALS research organizations include:

https://lesturnerals.org/research-patient-center/clinical-trials-studies/

https://neals.org/als-trials/als-clinical-research

https://www.hopkinsmedicine.org/neurology-neurosurgery/clinical-trials/als-clinical-trials

https://www.miami-als.org/research/

https://www.mayo.edu/research/clinical-trials/diseases-conditions/amyotrophic-lateral-sclerosis-(als)

What else can you add to our list?

I was diagnosed last May. My balance and walking hav been affected. And I fight fatigue daily.

If You’d Like to get in touch my name is Lis and my email is irisbloom@gmail.com

We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

Best questions to ask your doctor when you are initially diagnosed

Being told by your doctor that you have ALS can leave you feeling overwhelmed and unable to think of essential questions. Often all the questions come out later at home, with no doctor in sight. Or, the questions don’t come at all. If you have been recently diagnosed with ALS, here is a list to bring with you to your next appointment.

1. Is my form of ALS genetic or sporadic?
2. What medication(s) do you suggest? 
3. Should I enroll in a drug trial?
4. Would any of your current ALS patients be willing to talk (or email) with me to share their experiences?

What additional questions have you asked your doctor?

The ALS Network has been the friend I never wanted but never knew I needed… They offer such a wide array of free services including equipment loans, more than 30 monthly support groups, resources for children and families, educational programs, webinars, and each person living with ALS is paired with a professional care manager. My care manager has been an unbelievable resource and guide since the start of my journey. We check-in often and have become very good friends.

The ALS Network is also very involved with supporting advocacy and research efforts – to improve access to care along with finding better treatments and a cure for ALS. To find out more you can go to alsnetwork.org.

alsnetwork.org

Homepage | ALS Network

Homepage | ALS Network