People living with Amyotrophic Lateral Sclerosis feel like the fire inside them is slowly burning out.
Meet the dragon
ALSton
Amyotrophic Lateral Sclerosis (ALS)
How much do you know about Amyotrophic Lateral Sclerosis?
Take our PHantasticALS quiz!
The phantasticALS campaign was created to make all the dragons fighting ALS more seen and to encourage all to join us in raising awareness about this rare and debilitating condition.
Seeing is believing
What is it like to live with ALS?
“I was diagnosed with Progressive Bulbar Palsy/ALS in October 2020, but had started losing my speech a year before my diagnosis. I continue to live one day at a time. Each day is different, but I make sure I have fun. I golf, walk my dogs, ride my bicycle and exercise every day. My doctor requested that I have a peg tube put in my stomach while I was healthy so I did and it’s great. Try to stay active, let your friends help you and let them know how you’re feeling. Friends can be a big help. I can say this because I have a great community of family and friends who look out for me. I can say I’m blessed.”
Person living with ALS
To learn more, check “Living Longer with ALS” on ALS News Today here
What are your thoughts on clinical trials for people living with ALS?
“I was diagnosed about 6 months ago. I have signed up for a trial and will begin in early May. If given a placebo, I understand I will be able to try the medication after a 6-month study. While I’m hoping to benefit, I also think that doing what I can to benefit the community is also important to help find a cure someday. I do have a limit in that I do not want to deal with side effects the likes of chemotherapy. Each day is a gift and feeling well, as best I can, is important, both to myself and to my spouse.”
Person living with ALS
To learn more, check “What are your opinions and thoughts on volunteering for ALS clinical trials” on ALS News Today here
What do family members and caregivers of people living with ALS think?
“I’m married and my husband was diagnosed January ’19. As things settle down from those first few months of shock, I would say the hardest thing for me is knowing when to step forward and help and when to step back and let him work something out. He’s still quite capable on most levels, but he’s a proud person and sometimes attempts things that can actually be detrimental. Separating the caregiver from the spouse roles takes more focus. It’s a dance we’re doing and will continue to do.”
Family member and caregiver
To learn more, check “The impact of having ALS on a spouse” on ALS News Today here
#WeBelieveIn
phantasticALS
At Ferrer, our goal is to make a positive impact on society. Our aim is to provide significant and differential value to people suffering from severe illnesses. For that reason, we have defined a clear global strategy to develop a portfolio of holistic solutions and innovative products capable of transforming the lives of people living with serious and debilitating diseases, especially in the field of neurological disorders.
In order to contribute to the awareness of Amyotrophic Lateral Sclerosis, we launched PhantasticALS to reaffirm our commitment to people with ALS.
Because we know they exist, we can identify them, care for them and put all ours efforts in helping them.
June 21
World ALS Day
To support EUpALS mission and vision, and as part of our #RareButStillThere awareness campaign, Ferrer is also launching an engaging social media campaign on World ALS Day, which is held every 21st of June. We will do everything in our power to contribute to raising awareness about Amyotrophic Lateral Sclerosis and to share important educational content about this rare condition.
EupALS is a European association taking the interests of European pALS (ALS patients) to heart. They want to create equal rights for all the European pALS and provide better access to research and information about it. They are hence willing to assume and carry out their role within these 3 aspects. EUpALS aims to fight against ALS in Europe and make everybody aware of this terrible disease. This is why they want to unite all the European ALS associations: to fight harder together on a European scale.
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