10 posts tagged “Foundation”

Data donations make wishes come true

Posted September 10th, 2015 by

Back in December 2014, the PatientsLikeMe community donated 450,000 health data points during the 24 Days of Giving campaign, and a special thanks to everyone who participated and have continued to donate their data for good. Every donation made wishes come true for children with life-threatening medical conditions, and on behalf of the community, PatientsLikeMe made a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island, which helped Keith and Scarlett take a break from aggressive and uncomfortable treatments and doctors’ visits to go on faraway adventures with their families. Read about their stories below:

Keith
When 17-year-old Keith was diagnosed with lymphoma, his life was forever changed. Instead of fishing and playing sports, like he used to before he got sick, he now spends time in hospitals, enduring uncomfortable treatments. Keith longed to take a break from doctor’s visits and have a carefree vacation with his family; he wished to tour the Hawaiian Islands with his family on a Norwegian Cruise.

The PatientsLikeMe community made this happen! Once aboard the cruise ship, the crystal clear waters mesmerized Keith, as they took him to the Hawaiian islands of Kahului, Hilo, Kona, and Nawiliwili. Each new island provided a new world to explore. Keith and his family enjoyed pristine beaches, volcano views, whale watching and deep sea fishing.

Keith’s trip renewed his strength and hope for the future. He told Make-A-Wish Massachusetts and Rhode Island, “if you think about all the people who are emotionally going through so much because of what you’re going through, you become stronger than you can ever imagine. It shows your loved ones that there’s nothing to worry about.”

Thank you for donating your data and helping to give Keith and his family a vacation of a lifetime.

Scarlett
Though diagnosed with a brain tumor, three-year-old Scarlett wished to visit the TradeWinds Island Resort in Florida to explore the sea and the surf like her cartoon friends in her favorite movie, “Finding Nemo.” Scarlett and her family began their trip with a limousine ride to the airport. Upon arriving in sunny Florida, Scarlett tossed off her shoes to wiggle her toes around in the sand. She swam or built sandcastles on every beach – there was plenty for her to discover both in and out of the water. She even got to ride a giant waterslide and tried eating alligator meat at dinner.

Scarlett smiled all week long and her family savored quality time together. She had a week of carefree childhood. Scarlett’s mom and dad really enjoyed reminders of their daughter’s adventurous spirit.

Scarlett’s mom, Michelle, wanted to share with the caregiving community a few tips on coping with a young child who has a serious illness. Here’s what she shared:

When we were going through Scarlett’s treatment, people said to us ‘I don’t think I could do it’ and I always said to them ‘When you have to do something, you find a way.’ What were we going to do? Lay in bed and pull the covers over our heads? I would say:

  1. Don’t be afraid to accept any help that is offered (or ask for help) and don’t think people can read your mind. If someone asked, “What can I do?” I asked for specific things like “come keep us company during infusion weekends in the hospital” or asked for clothes when I was so stressed out that I lost weight and clothes for Scarlett after her surgery when she couldn’t pull a shirt on over her head.
  2. For couples – let one person be the emotional support and the other be the physical support. My husband is a nurse so he took care of making sure she drank plenty of water and ate plenty of fiber. I made sure that we still went to the park and birthday parties and lived life as normally as possible.
  3. My husband’s advice – drink prune juice and lots of water. Believe it or not, we probably saved her kidneys by giving her syringes filled with water all day when she didn’t want to drink. We kept her regular by giving her prune juice every day. Simple but very important.

Share this post on Twitter and help spread the word.


Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation

Posted August 14th, 2015 by

In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, and friend of Jeff Cole, was diagnosed with ALS. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004.

Mary Ann Singersen also has family experience with the neurological condition. Her father, Edward, was diagnosed two years before Stephen, and she co-founded the A.L.S. Family Charitable Foundation, now a partner of ours here at PatientsLikeMe. Mary Ann recently sat down for a blog interview and spoke about her inspiration to start the organization, her philosophy about ALS and what advice she would have for anyone living, or caring for someone, with ALS.

Can you share with our followers how your own family’s experience with ALS inspired you to start the A.L.S. Family Charitable Foundation? 

My father, Edward Sciaba Sr., was diagnosed with ALS in 1995. Going through this ordeal really opened my eyes to the plight of not only the patients but their families as well. In 1998 he lost his battle with ALS.

Our Co-Founder Donna Jordan also lost her brother Cliff Jordan Jr. to ALS the same year. (Our “Cliff Walk” is named for him).

We met through volunteering in the ALS community and thought that since we already had the Walk in Cliff’s name, we would like to be sure that the funds raised were used to help patients with their financial and emotional needs. We also wanted to further research efforts so we donate a portion to ALSTDI and UMASS Memorial Medical.

Donna and I went on to co-found the A.L.S. Family Charitable Foundation and we pride ourselves on our ability to put patients and their needs first. We offer many in-house programs that help with family vacations, day trips, respite, utility bills, back to school and holiday shopping, college scholarships for children of patients, etc. At this time, our programs are restricted in that they are available to New England area residents only.

We know you have your biggest event of the year – The 19th Annual “Cliff Walk” For A.L.S. – coming up on September 13. Can you share some more information about the event and its history? How can people get involved?

My co-founder and friend Donna Jordan’s brother Cliff was diagnosed with ALS at 34 years of age and he wanted to do something to support research efforts, so he held a walk on the Cape Cod Canal and 60 people came and raised $4,000.

Every year since then, the Walk has grown and grown. Last year, we welcomed 1,500 participants and raised over $220,000.

The “Cliff Walk®” is a seven mile walk along the Cape Cod Canal followed by live musical entertainment, fun activities for the whole family and lots of great food! If folks wish to come to the Walk we ask them to download a pledge sheet or make an online fundraising page.

On your website you say, “Until there is a cure…there is the A.L.S. Family Charitable Foundation.” Where do you and the organization see research focused in the future? What’s the next step? 

I can only say that I hope with all the funds raised by ALS organizations around the world and with the success of the Ice Bucket Challenge, there just has to be a cure on the way. In the meantime, we are here to help in any way we can.

We’re thrilled to be a partner of the A.L.S. Family Charitable Foundation. How do you think those living with ALS can benefit from PatientsLikeMe? How can PatientsLikeMe ALS members benefit from the A.L.S. Family Charitable Foundation? 

PatientsLikeMe is a great resource for anyone living with any condition – not just ALS. It’s also great for caregivers. ALS patients more than any other condition are online researching their symptoms, what helps, what doesn’t. They and their collaboration with each other may hold the key to better treatment options and someday maybe a cure.

Our Foundation prides itself on putting patients and their needs first. Our services are open to New England area residents and include granting funds to help with equipment, bills, respite services, college scholarships to children of patients, vacations, day trips, back to school and holiday expenses and any other needs we are able to meet. So please if you or a loved one have ALS and live in New England contact us for assistance. Call Debbie Bell our Patient Services Coordinator at 781-217-5480, email her at debbellals@aol.com or call our office at 508-759-9696 or email alsfamily@aol.com.

We also wish to find a cure for our loved ones living with ALS, so we fund research efforts at ALS TDI and UMASS Memorial Medical Center.

From your own personal experiences, what advice would you give to someone living with ALS, and to his or her family members and friends? 

Take help anywhere you can get it. Don’t ever feel like you shouldn’t ask because someone who needs it more will be denied, or because you have received help from another organization. Funds we and other organizations raise are for you and people like you.

If you or a loved one has ALS and live in the New England area, visit the A.L.S. Family Charitable Foundation website for more information and to request assistance.”

Share this post on Twitter and help spread the word for ALS.


Getting ready for psoriasis awareness

Posted July 31st, 2015 by

Image courtesy of the National Psoriasis Foundation

Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe.

What does psoriasis look like? It’s a skin condition caused by unknown factors, and most people have red, itchy, scaly patches, especially around their knees, elbows and scalp. Psoriasis IS NOT contagious, yet people living with this skin condition often experience stigma when others notice their symptoms.

The NPF has a calendar full of events to create awareness about treatments, and offer support for the psoriasis community. Visit their website to learn more about what’s going on in your city or town. You can join “Team NPF” to participate in a walk, run, or other fund-raising event near you.

During Psoriasis Awareness Month, check out PatientsLikeMe posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews with MariaDavid and Erica, and learn what doctors Jerry Bagel and Steve Feldman have to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe.

Share this post on Twitter and help spread the word for psoriasis.


What do you know about getting enough sleep?

Posted March 2nd, 2015 by

That’s what the National Sleep Foundation (NSF) is asking during Sleep Awareness Week to help everyone better understand why sleep matters. And what you know probably depends on your own experiences. Are you living with insomnia or a chronic condition that impacts your sleep? Or do you just have a restless night every once in a while?

Back in 2013, more than 5,000 PatientsLikeMe members participated in a survey about their sleeping habits, and we shared what the community helped to uncover (get it!?) in a series of infographics on the blog. Nearly a third of respondents never (5%) or rarely (25%) got a good night’s sleep, and almost half (44%) frequently woke up during the night. Poor sleep is the norm for people living with life-changing health conditions, and it affects everything from driving to relationships and sex – view the infographics here.

To help launch Sleep Awareness Week, the NSF released their “Sleep in America” poll results today, including the 2015 Sleep and Pain survey, which looked to find if stress and poor health were related to shorter sleep durations and lower quality sleep. The poll found that:

  • Greater stress was associated with less sleep and worse sleep quality
  • Pain was related to greater sleep debt – the gap between how much people say they need and the amount they’re actually getting1

For everyone living with these sleep issues, you can help raise awareness this week on social media through the #SleepWeek hashtag. And if you’d like to share any PatientsLikeMe infographics or results, please use the #areyousleeping hashtag.

If you’ve been struggling with sleep, read what PatientsLikeMe members Lori (living with idiopathic pulmonary fibrosis) and Marcia (living with multiple sclerosis) had to say about their insomnia. And don’t forget to reach out to the community in the Sleep Issues forum on PatientsLikeMe – over 40,000 members are sharing about everything related to their sleep.

Share this post on Twitter and help spread the word for Sleep Awareness Week.


1 http://sleepfoundation.org/sleep-polls-data/2015-sleep-and-pain


Throwing it back this Thursday for Crohn’s and Colitis awareness week

Posted December 4th, 2014 by

We’re throwing it back this Thursday, but to help raise awareness for something that’s happening right now: National Crohn’s and Colitis Awareness Week (Dec. 1st to 7th). For this #TBT, our very own Maria Lowe shares about her experiences with Crohn’s disease. Maria is part of the PatientsLikeMe Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

This week, it’s all about raising awareness for everyone living with IBD. You can learn how to help on the Crohn’s and Colitis Foundation of America’s (CCFA) website, and be sure to share your support on social media via the #CCFAawarenessweek hashtag. And if you’ve been recently diagnosed with either Crohn’s or UC, reach out to others like you on PatientsLikeMe.

Share this post on Twitter and help spread the word for Crohn’s disease and ulcerative colitis.


What’s your epilepsy story?

Posted November 3rd, 2014 by

That’s what everyone’s asking this November during National Epilepsy Awareness Month.  If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition.

What are three things you need to know about epilepsy? 1

  • It’s a condition that affects the nervous system and causes seizures
  • A seizure is a disruption of the electrical signals between brain cells (neurons)
  • People are diagnosed with epilepsy after they experience two or more unexplained seizures separated by at least 24 hours

Epilepsy affects about 50 million people around the world, including over 2 million in the United States alone.2 3 Although there is no cure for epilepsy, seizures can be managed and suppressed through medications, non-medication treatments such as vagus nerve stimulation, or surgery.4 5 6

To help raise awareness this month, the Epilepsy Foundation of America (EFA) has organized a series of short online videos that feature people from all over the U.S. sharing their experiences with epilepsy. Watch one of them below and check out the rest on the EFA’s “Story Days” campaign page.

 

Los Angeles

Don’t forget to check out Letitia’s video, too – she’s a PatientsLikeMe member who has been living seizure-free after she learned about an epileptologist through her community. And if you’ve been diagnosed, reach out to the more than 9,000 PatientsLikeMe members living with epilepsy.

Share this post on Twitter and help spread the word for psoriasis.


1 http://www.epilepsy.com/learn/about-epilepsy-basics

2 http://www.who.int/mediacentre/factsheets/fs999/en/

3 http://www.cdc.gov/epilepsy/basics/fast_facts.htm

4 http://www.uptodate.com/contents/overview-of-the-management-of-epilepsy-in-adults?source=search_result&search=epilepsy&selectedTitle=3~150

5 http://www.uptodate.com/contents/evaluation-and-management-of-drug-resistant-epilepsy?source=see_link

6 http://emedicine.medscape.com/article/1184846-treatment#aw2aab6b6b2


PatientsLikeMe Develops Patient and Scientific Advisory Boards

Posted September 17th, 2014 by

Company Forms First Member-Based Team of Advisors,
Names New Participants to ORE Scientific Advisory Board

CAMBRIDGE, Mass.—September 17, 2014—PatientsLikeMe has formed its first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. The company also named three new members to the Scientific Advisory Board for Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues. ORE was created with support from the Robert Wood Johnson Foundation.

A long-time advocate for the patient voice in medical research, PatientsLikeMe posted an open call for the patient-led Team of Advisors in its member forums and was overwhelmed with applications. “Our members are at the heart of our pioneering approach to research, and they’re very focused on sharing their experience to improve medicine,” said Executive Vice President of Marketing and Patient Advocacy Michael Evers. “Now their voice will extend even further as we continue to revolutionize the way that healthcare is developed and delivered.”

Team members are representative of the PatientsLikeMe community at large and include veterans, nurses, social workers, academics, and advocates. They range in age from 32 to 67 years old, and two thirds are female. They are also living with a cross section of conditions, including amyotrophic lateral sclerosis (ALS), attention deficit disorder (ADD), bipolar II, epilepsy, Fabry’s disease, fibromyalgia, lupus, major depressive disorder (MDD), multiple sclerosis and Parkinson’s disease. Members named to the team include: Letitia Browne-James, Emilie Burr, Lisa Cone-Swartz, Charles DeRosa, Amy Fees, Geof Hill, Dana Hunter, Rebecca Lorraine, Kitty O’Steen, Steve Reznick, Karla Rush, and Deborah Shuman. Bryan Kincaid, an initial member of the team living with idiopathic pulmonary fibrosis (IPF), passed away last month. “The data that Bryan shared on his condition and his contributions to the team live on and will continue to have lasting impact,” Evers said.

The Team of Advisors has already met in person and will spend 12 months providing feedback to PatientsLikeMe’s research team. As part of their work, they will develop and publish a guide that outlines standards for how researchers can meaningfully engage patients throughout the research process. Amy Fees, who is living with Fabry and lupus, said: “I feel encouraged that the particular people chosen for this team share a passion for making something more out of their diseases than an affliction and a curse.”

PatientsLikeMe also added three advisors to its ORE Scientific Advisory Board. The group was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE. New advisors include:

  • Dr. Helen Burstin, Chief Scientific Officer of The National Quality Forum;
  • Eugene Nelson, Professor of Community and Family Medicine and Director of the Dartmouth Institute’s Population Health Measurement Program;
  • Ken Wallston, Professor of Psychology in the School of Nursing, Vanderbilt University.

Information on all ORE Scientific Advisory Board members is available at https://www.openresearchexchange.com/advisors.

About ORE
PatientsLikeMe’s Open Research Exchange (ORE) was launched in 2013 as an online hub to help researchers design, test and openly share new ways to measure diseases and health issues. ORE involves patients at each step of the measure development process, enabling PatientsLikeMe’s members to guide and contribute to research so that it better reflects their needs. ORE is supported by grants from The Robert Wood Johnson Foundation.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com


More than skin deep

Posted August 10th, 2014 by

 

August might mean the summer’s almost over, but the effort to raise awareness for psoriasis is going strong. It’s Psoriasis Awareness Month, sponsored by the National Psoriasis Foundation (NPF), and everyone is working to eliminate stigma and dispel the myths surrounding the skin condition.

 

 

Starting with the basics

Q: What is Psoriasis?
A: Psoriasis is a chronic, genetic autoimmune condition that causes red, scaly patches on the skin that itch, crack and bleed.1

Q: Who is living with psoriasis?
A: Over 7 million Americans (equally men and women), and global estimates say 2-3% of the world’s population – as many as 125 million people – has the condition.

Dispelling the myths 

Q: Can I catch it from someone else?
A: It’s NOT contagious! Psoriasis is triggered by a combination of genes inherited from parents and exposure to outside factors such as stress, smoking or infections.2

Q: Is there a cure?
A: There is currently no cure, but individualized treatment options are available that reduce inflammation and skin damage.2

Q: Is all psoriasis the same?
A: Nope, there are many different forms of psoriasis, which you can learn about by visiting the NPF’s description page.

But these questions just start the conversation about psoriasis, and getting involved is a great way to educate others. Unsure where to begin? The NPF has some great activities, including national Walks to Cure Psoriasis and “More Than Skin Deep” informational events. And if you have psoriasis, you can apply for the NPF’s One-on-One program, where people living with the condition mentor those who’ve been newly diagnosed.

Don’t forget to visit the psoriasis community at PatientsLikeMe, too. You’ll see how other members treat their psoriasis, and you’ll be connecting and learning from the people who know what’s its like.

Share this post on twitter and help spread the word for Psoriasis Awareness Month.


1 http://www.biotech-now.org/health/2012/08/august-is-psoriasis-awareness-month-psoriasis-isnt-contagious-but-awareness-is

2 http://www.niams.nih.gov/Health_Info/Psoriasis/psoriasis_ff.asp


Taking action for lupus awareness in May

Posted May 16th, 2014 by


If you think you look good in purple, you’re in luck – today is Put on Purple Day, sponsored by the Lupus Foundation of America. As part of the greater Lupus Awareness (Action!) Month in May, today is your chance to make lupus visible and learn about the effects of this chronic inflammatory condition.

Lupus is classified as an immunological disorder by the National Institute of Health, which means that it can affect anything from your joints, skin and kidneys to your heart, lungs and brain.1 Systemic lupus erythematosus is the most common type of lupus, but there are a few other kinds that are much more rare. The cause of lupus is unknown, and anyone can be diagnosed, although it mostly affects women. Some common symptoms of lupus include:

  • Pain or swelling in joints and muscle pain
  • Fever with no known cause
  • Red rashes, most often on the face
  • Chest pain when taking a deep breath
  • Hair loss
  • Pale or purple fingers or toes
  • Sensitivity to the sun
  • Swelling in legs or around eyes
  • Mouth ulcers
  • Swollen glands

Since these symptoms are frequently caused by many other health conditions, you can see why getting diagnosed with lupus can be a difficult process. Many people who are living with lupus don’t even know it yet! 2 3

To help raise awareness for lupus, snap a photo of yourself in purple and submit it to the Lupus Foundation’s Tumblr page. And if you’d like some more ideas for awareness in May, visit the official Lupus Awareness Month page for info on donations, toolkits, quick facts and more.

The PatientsLikeMe team all decked out for Put on Purple Day!

The PatientsLikeMe lupus community is growing, so if you’ve been diagnosed, reach out to the more than 4,000 members who know all about living with the condition. They’re donating health data on treatments and symptoms, and don’t hesitate to ask a question in the forum, either – the community is always up for sharing what they know.

 Share this post on twitter and help spread the word for Lupus Awareness Month.


1 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

2 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

3 https://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html


PatientsLikeMe invites patients to lead research projects on Open Research Exchange

Posted March 29th, 2014 by

New $2.4 Million Grant from the Robert Wood Johnson Foundation Supports Two Patient-Led Projects in 2014 to Develop, Test and Validate Patient-Reported Outcomes

CAMBRIDGE, Mass.—March 27, 2014—Expanding on its mission to put patients at the center of clinical research, PatientsLikeMe today announced that patients can now apply to lead the development of new health outcome measurements using the company’s Open Research Exchange™ (ORE) platform. This call for participation is a way for people living with disease to become the researcher, and to use their own and others’ experiences to create new health measures that are more meaningful, helpful, and relevant.

ORE was launched in 2013 as an online hub for the development of patient-reported outcomes (PROs)—measures used by clinicians to gauge health, disease severity, and quality of life. Since then, thousands of PatientsLikeMe members have given researchers feedback on measures relating to hypertension, treatment burden, diabetes and appetite, and primary palliative care. There were six pilot studies fielded on ORE last year and, while response goals varied from study to study, on average researchers using ORE collected 100 percent of their required responses in less than a week’s time. PatientsLikeMe’s Vice President of Innovation Paul Wicks said that’s far faster than the average 6-12 months it can take to gather similar data via in-person meetings or telephone and web-based questionnaires.

“We’re only beginning to see how ORE can simplify and speed up the research process, and how our members’ experience with more than 2,000 conditions can help researchers more clearly hear the patient voice,” Wicks said. “Now, we’ll be able to work alongside patients as they shape the next generation of research tools and lead future advancements in the research process.”

The Robert Wood Johnson Foundation (RWJF), whose 2013 grant of $1.9 million funded the platform’s start, will accelerate ORE’s innovative approach to developing measures with an additional $2.4 million grant.

“We are eager to invest in innovation that explores how to put patients more firmly in the driver’s seat of their care and of discovery in medicine,” said RWJF Senior Program Officer Paul Tarini. “We’re excited to see the potential impact that patients can have in clinical care and research with ORE’s new phase.”

Patients who want to ensure research goes in a direction that addresses their needs and concerns and who have an idea for a new measure are invited to apply at https://www.openresearchexchange.com/patients.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook. 

About the Robert Wood Johnson Foundation

For more than 40 years the Robert Wood Johnson Foundation has worked to improve the health and health care of all Americans. We are striving to build a national culture of health that will enable all Americans to live longer, healthier lives now and for generations to come. For more information, visit www.rwjf.org. Follow the Foundation on Twitter at www.rwjf.org/twitter or on Facebook at www.rwjf.org/facebook.