4 posts tagged “hope”

Research, support and hope for spinal muscular atrophy

Posted August 11th, 2014 by

If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological disorders are sharing their stories and donating health data to help improve the lives of others and contribute to medical research. And in the spirit of Stephen and everyone living with these conditions, we’re recognizing Spinal Muscular Atrophy Awareness Month this August.

Spinal muscular atrophy (SMA) affects the nerves responsible for movement, including breathing and other bodily functions. It is inherited through genes passed on by parents who are carriers of the genetic code.

SMA affects people of all ages, genders and backgrounds. There are four types of SMA – Types 1, 2 and 3 all affect children and adolescents, while type 4 is usually limited to those above the age of 35. And although SMA is classified as a rare condition, think about this: SMA affects approximately 1 in every 6,000 babies, and about 1 in 50 people are carriers for the condition.1

So what can you do this August to raise awareness for SMA? Orange and purple are the two colors designated for SMA awareness, so wear or display them and let people know why you are! The Families of SMA (FSMA) also organizes many awareness events around the world, everything from walks to dinners to Bowl-A-Thons. Check out their website and find an event near you.

Share this post on twitter and help spread the word for Spinal Muscular Atrophy Awareness Month.


1 http://www.fsma.org/FSMACommunity/understandingsma/quickfacts/


Uniting for hope on Rare Disease Day 2014

Posted February 28th, 2014 by

hopeToday, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare.

In the United States, a disease is considered rare if it affects less than 200,000 people at any given time. Rare diseases affect almost 1 in 10 Americans, and many times, they cause common symptoms that can be mistaken for other conditions.1

 

All across the world, people are raising awareness for rare disease. Here are just a few things you can do to join them.

  • Wear your favorite pair of jeans today to help the Global Genes Project promote the Blue Denim Genes Ribbon
  • Use the hashtags #CareAboutRare and #WRDD2014 and share them with @GlobalGenes on Twitter and Facebook
  • Find an event in your state and participate in local activities
  • Print out this flyer, take a photo of yourself with it, and submit it to Handprints Across America

Rare diseases have a personal connection with PatientsLikeMe – our co-founders’ brother, Stephen, was diagnosed with ALS (Lou Gehrig’s Disease) in 1998, and their family’s experiences with the condition led to the beginning of PatientsLikeMe. In 2012, we partnered with  the Global Genes Project  to create the RARE Open Registry Project to help those diagnosed find others like them in one of the over 400 rare disease communities on the site, and  launched the first open registry for people with alkaptonuria (AKU) with the AKU Society in early 2013. We also accelerated our focus on enhancing the idiopathic pulmonary fibrosis (IPF) community through a collaboration with Boehringer Ingelheim. And now, the IPF community on PatientsLikeMe is the largest open registry with close to 1,900 members …and counting.


1 http://rarediseaseday.us/about/