4 posts tagged “advocacy”

What do you know about brain injuries?

Posted March 23rd, 2014 by

The Brain Injury Association of America (BIAA) explains it simply – a brain injury can happen anytime, anywhere, to anyone. That’s why March is Brain Injury Awareness Month. It’s time to learn more about traumatic injuries that can affect the brain and nervous system and share our experiences to increase awareness about everything from concussions to long-term disabilities.

If the skull gets hit hard enough, the brain can experience concussions, contusions and other types of traumatic conditions. It’s a little different for anoxic or hypoxic brain injuries – these happen when the brain receives too little oxygen, or none at all.

This month, there are plenty of ways to raise awareness about all types of brain injuries.  Reach out to your state’s BIAA affiliate to see if there are any local activities to participate in. The BIAA also has a great Brain Injury Awareness Month logo. Share it on Twitter and Facebook to spread the word on social.

If you’ve been recently diagnosed with a brain injury, you can visit the TBI community on PatientsLikeMe and share your experiences in the injuries and traumas forums. Over 900 TBI members are tracking their symptoms and sharing information about their treatments –join in today.


PatientsLikeMe at the 2nd Annual White Coat Affair for ALS TDI

Posted November 28th, 2012 by

On Friday, November 2nd, several PatientsLikeMe team members donned their finest to attend the 2nd Annual White Coat Affair, a charity gala benefiting the ALS Therapy Development Institute (ALS TDI).  Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS, also known as Lou Gehrig’s disease.

The PatientsLikeMe Team Along with ALS Patient Steve Saling (Front) at the 2nd Annual White Coat Affair for ALS TDI

This gala fundraiser was held in conjunction with ALS TDI’s 8th Annual Leadership Summit, which included in-depth scientific presentations by top ALS researchers, a discussion panel with industry leaders and an awards ceremony honoring individuals who have made extraordinary contributions to ALS research and advocacy.  (View the summit webcast here.)  PatientsLikeMe was a proud sponsor of this annual gathering of the most influential minds in the ALS community.  In particular, we were honored to witness the posthumous awarding of the Stephen Heywood Patients Today Award – given annually to an individual who exemplifies what it means to be an educator, role model and advocate – to beloved PatientsLikeMe member Persevering (Rob Tison).

Keeping with the Laboratory Theme, The Name Cards Were Inspired by the Periodic Table of Elements

Held at the Fairmont Copley Plaza in Boston the next night, A White Coat Affair was an opportunity for summit attendees to unwind and socialize via cocktails, a dinner program, live music and dancing.  In honor of the theme, servers wore white lab coats, name cards were labeled like the periodic table and vases were filled with brightly colored liquid to resemble lab tubes.  A special highlight of the dinner program this year was the Young Perspectives on ALS segment, which featured the stories of two young people living with ALS (Corey Reich and Pete Frates) as well as four young people who are the children of ALS patients (Katie Shambo, Sam Ketchum, Jenn Sutherland and Alex Heywood).

As you might have guessed, Alex Heywood is the son of Stephen Heywood and nephew of PatientsLikeMe Co-Founders Jamie Heywood and Ben Heywood.  Both ALS TDI and PatientsLikeMe were inspired by Stephen’s seven-year battle with ALS, a rapidly progressive neurodegenerative disease with an average life expectancy of two to five years following diagnosis.

Young ALS Patients and the Sons and Daughters of ALS Patients Were the Focus of This Year's Dinner Program

Approximately 350 guests attended A White Coat Affair, helping to raise $450,000 towards ALS TDI’s efforts to discover and develop effective treatments for ALS. After a decade of progress, the institute is entering a time of great promise, with several therapies in clinical trials and their own work on Gilenya (a drug currently approved for treating multiple sclerosis) and other potential therapeutics moving into the clinical realm.  Learn more about ALS TDI’s current research projects here.

To see more photos from the 2nd Annual White Coat Affair, visit the event’s Facebook page.


PATIENTSLIKEME AND R.A.R.E PROJECT UNITE TO FIND AND CONNECT ONE MILLION RARE DISEASE PATIENTS

Posted November 8th, 2011 by

FOR IMMEDIATE RELEASE

Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event

NEW YORK, NY – November 7, 2011 - Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions.  The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012.

PatientsLikeMe's New Partner, The R.A.R.E Project

“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E.  “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.”

The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by rapidly connecting patients to researchers, companies, nonprofits and patients like them. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, engage nonprofits and local specialists, and contribute their health data to the open patient registry at PatientsLikeMe. Unlike other registries, PatientsLikeMe allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies so they can also compare their data across other diseases.

“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well characterized patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you. We will change that.”

For more about the R.A.R.E Project, including current awareness campaigns, go to: http://rareproject.org.  For patients and nonprofits that want to join PatientsLikeMe, go to http://www.patientslikeme.com.

ABOUT R.A.R.E PROJECT

The R.A.R.E. Project exists to raise rare disease awareness, unify and empower a vibrant global rare disease community, and fund innovations to support ‘in-their-lifetime’ rare disease research.

ABOUT PATIENTSLIKEME

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

PatientsLikeMe member lscanlon


Being an Advocate for ALS

Posted June 7th, 2011 by

Last month, we had the opportunity to interview PatientsLikeMe member t1961, who attended ALS Advocacy Day, held May 8-10, 2011, in Washington, DC. What does it mean to advocate for your disease on Capitol Hill? How can you personally make a difference? Check out the interview below to learn why this ALS patient felt the need to get involved and “put a face on this monster.”

ALS Advocacy Day

1.  What is ALS Advocacy Day?

ALS Advocacy Day was a national conference with ALSA Chapters of the USA and with patients with ALS (PALS) and their families and caregivers (CALS). We met in Washington, DC, where they held several information sessions on topics from Medicare to Familial ALS (FALS) to Congress 101. Each PALS and CALS with their local ALSA Chapter met with their home state Congressmen and Congresswomen. The purpose was to ask for more funding for the National ALS Registry and the ALS Research Program (ALSRP) though the Department of Defense.

2.  Why did you decide to take part?

My voice is for all the other PALS, whose worlds’ have been turned upside down by ALS. Personally, I want a treatment and cure. I don’t want other young grandmothers not to be able to hold their grandbabies, like me. Or to be able to play Simon Says or Duck, Duck, Goose. I went to tell my story, the heartache, the pain this disease has cost my husband, daughters and grandchildren. To put a face to this monster!

3. We heard you met up with several other members of PatientsLikeMe at this event. What was that like?

Yes, I got to meet some PatientsLikeMe members, and it was wonderful. PatientsLikeMe is an extended family. We are all from all over the world, but we became brothers and sisters to each other. We understand what each others’ daily lives are like. We laugh, cry and mourn together. I know if I have a question, I’ll get an answer, and we have become very creative with how to do normal daily things.

4. You’re both active offline and online at PatientsLikeMe. How has PatientsLikeMe helped you with your ALS?

First of all, every new PALS I meet at MDA clinical checkups or support group meetings, I ask if they are on the PatientsLikeMe website. If not, I give them the site’s address and explain that it’s something that they need to get on. PatientsLikeMe knows more than the doctors, who slowly watch and take notes on us slowly weakening and dying. PatientsLikeMe PALS/CALS can tell you what medicines work best, what is the best power wheelchair for your lifestyle, how to remodel your bathroom, what it the best kind of handicap van and where to locate them. The list can go forever.

5. What are some of the things you would want to tell a newly diagnosed patient about ALS?

Enjoy your family and friends. Take it one day at a time. Get your affairs in order. It’s okay to cry and mourn for the things that you won’t to be able to do in the future but keep living now. And talk about ALS and its effects on you and your family. Educate the people around you about Lou Gehrig’s disease. Remember: research+ education = treatment. Funding + research + treatment = CURE!

6. What is something few people know about ALS ?

It’s not a painless disease. It knows no gender, age, race.

PatientsLikeMe member jdevita