World Mental Health Day 2015: What does dignity mean to YOU?

Posted October 9th, 2015 by

Mental illness affects people in every corner of our global community. Thousands with mental health conditions around the world can face discrimination, stigma, and emotional and physical abuse in mental health facilities. Additionally, many receive poor quality of care due to dilapidated facilities and lack of qualified health professionals.[1]

The theme for this year’s World Mental Health Day, observed annually on October 10th, and sponsored by the World Federation for Mental Health (WFMH), is “Dignity in mental health” and focuses on how dignity can be provided in all aspects of mental health – from patient care to the attitudes of the general public.

The WFMH’s goal when it established World Mental Health Day in 1992 was public education at all levels of society. Today it’s become the largest and most widely promoted education and advocacy program of the WFMH.

How can you take part?  You can read and share their campaign materials. And on social media, they’ve been asking: What does dignity mean to YOU? #WMHDay. You can share your responses on their Facebook and Twitter. And don’t forget to log in to your PatientsLikeMe community to share there as well.

Defining dignity, together.


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The highs and lows of bipolar disorder

Posted October 7th, 2015 by

Since it’s still Mental Illness Awareness Week, we thought we’d share some facts on bipolar disorders, found in this dynamic infographic. Read our previous post for more information on how to get involved during this year’s awareness week – and all year long. 

Did you know bipolar disorder is a worldwide condition?

  • In Australia there are around 238,957 people with bipolar disorder.
  • In the UK: 723,248 people.
  • Germany: 989,095
  • Canada: 390,094
  • Iran: 810,038
  • India and China, each have 12 – 15 million people who are bipolar

By the numbers…

  • 5.7 million: number of adult Americans affected by bipolar disorder (or 2.6% of population) today
  • 25: average age for beginning of bipolar disorder
  • 50/50: men and women get bipolar equally
  • 3X: But women are 3 times more likely to experience rapid cycling with B.D.
  • 6: Bipolar disorder is 6th leading cause of disability in the world.

For more facts about bipolar disorder, visit the full infographic. And don’t forget to share your experiences with bipolar disorder with the PatientsLikeMe bipolar community.

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Mental Illness Awareness Week: #IAmStigmaFree

Posted October 5th, 2015 by

The National Alliance on Mental Illness (NAMI) spends the first full week of October fighting stigma, offering support, educating the public and advocating for equal care for those living with a mental health condition. While these are a year round focus for them, this week highlights mental illness awareness and 2015 marks its 25th anniversary.

This year’s theme revolves around building momentum through the new StigmaFree initiative. Being stigma free means:

  • learning about and educating others on mental illness
  • focusing on connecting with people to see each other as individuals and not a diagnosis; and most importantly
  • taking action on mental health issues and taking the StigmaFree pledge.

Did you know…

  • 1 in every 5 adults – 43.7 million – in America experiences a mental illness.
  • 50% of all lifetime cases of mental illness begin by age 14 and 75% by age 24.
  • Nearly 1 in 25 adultsapproximately 13.6 million –in America live with a serious mental illness.[1]

Mental Illness Awareness Week encourages people to come together to improve the lives of the tens of millions of Americans affected by mental illness.

How can you get involved?
You can learn how to spread awareness this week on the NAMI site. You can involve friends and family in a movie night, book club or awareness day at work or school. Share your story on the You Are Not Alone page. Engage your community in advocating for mental health. Learn the facts. Or join a NAMI Walks team.

National Depression Screening Day
Held on October 8th, during Mental Illness Awareness Week, National Depression Screening Day (NDSD) is comprised of awareness events that include an optional screening component.

National Depression Screening Day began in 1990 as an effort by Screening for Mental Health (SMH) to reach individuals across the nation with important mental health education and connect them with support services. Today, NDSD has expanded to thousands of colleges, community-based organizations, and military installations providing the program to the public each year.

So however you choose to get involved this week, don’t forget to log in to your PatientsLikeMe community to continue sharing your own stories with others.

Let’s fight stigma, together.

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#HelpingWomenNow: October is breast cancer awareness month

Posted October 1st, 2015 by

October is Breast Cancer Awareness Month, which you’ve probably noticed by the annual surge of pink ribbons – but what does it really mean? The yearly campaign to increase awareness of the disease, hosted by the National Breast Cancer Foundation (NBCF), is about encouraging women to have a plan for early detection with its theme of #HelpingWomenNow.

Since 1 in 8 women will be diagnosed with breast cancer during their lifetime and it is the most common cancer among women worldwide, continued awareness and education efforts are vital in promoting the importance of early detection.

This month you can explore one of the several ways to get educated or get involved:

Early Detection Plan
Create an Early Detection Plan and invite others to do the same through their online site or using the mobile app.

Beyond the Shock

Share Beyond The Shock, the NBCF’s breast cancer educational resource, with friends and family. This free and comprehensive online guide to understanding breast cancer is a resource for women who have been diagnosed with breast cancer, a place for loved ones to gain a better understanding of the disease, and a tool for doctors to share information. Here you can learn through a series of educational videos, ask and answer questions about breast cancer and hear inspirational stories from breast cancer survivors.


Host a Fundraiser to help provide mammograms for women in need. There are many ways to support the NBCF during Breast Cancer Awareness Month.  You can host an event or an online fundraiser, participate in a physical activity, or be a brand ambassador.

And don’t forget to share your own experiences within the PatientsLikeMe community.

#HelpingWomenNow, together.

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Cancer awareness in September: Prostate, ovarian and thyroid

Posted September 29th, 2015 by

September was an awareness month for three types of cancer – prostate, ovarian and thyroid – and the emphasis fell on early detection, something to keep in mind year round.

Man up. Get checked.  #manupgetchecked
This month, the Prostate Cancer Foundation (PCF) teamed up with boxing legend Evander Holyfield for a PSA. The PCF also provides helpful guides including questions to discuss with your doctor.

WhyTeal? #TakeActionNotChances
The National Ovarian Coalition sponsors the WhyTeal awareness month for ovarian cancer. For them, raising awareness and promoting education about this disease is crucial in helping women to earlier diagnoses and supporting survivors – making a difference demands taking action.

Get a Neck Check!
With tips, awareness tools and graphics, and video and audio PSAs, the Thyroid Cancer Survivor’s Association offers enough information for people to stay involved throughout the year.

And don’t forget to stay on top of your own condition – by continuing to add your data and experiences on the PatientsLikeMe site. Every piece of information can help change medicine for the better!

Let’s stay aware, together.

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September is Global Pulmonary Fibrosis Awareness Month

Posted September 28th, 2015 by

If you hadn’t already heard about September being named Global Pulmonary Fibrosis Awareness Month by The Pulmonary Fibrosis Foundation (PFF), there are still two days for you to join in and help spread the word.

What does “global awareness” mean?

Pretty much just what it sounds like. It’s spreading awareness so that everyone around the world knows what PF is. If you’re living with it, you won’t have to explain it to those around you anymore. If you’re not, you’ll have an idea of what those with PF are going through.  And it means that we all make a unified commitment to improve the lives of patients through resources, research, and the development of new treatments.

How can you help?

Global also means everyone. Including you.

There are many ways you can get involved in raising awareness among family, friends, healthcare professionals, colleagues, neighbors, leaders in your community and anyone else in your life through the end of the month. (Hint: You can start by sharing this blog!)

You can “Blue-It-Up” if you want. For this social media challenge, draw attention to PF by putting blue in your hair, wrapping blue ribbon around your trees or visiting a spa for a blue mani-pedi with some friends and then sharing your pictures online with #BlueUp4PF.

Feel free to post your #BlueUp4PF pictures and share your own experiences within the PatientsLikeMe community. We’ll post some of the responses on our Facebook and Twitter to raise awareness.

For more information and ideas on how to participate, visit Thanks for sharing!

Let’s raise awareness, together.

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#NotAlone: On PatientsLikeMe, no one is alone

Posted September 14th, 2015 by

Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that is what Stephen Heywood inspired.

Today, more than 350,000 members are part of the community, and through learning, connecting and tracking, they are #NotAlone.

Over the next few weeks, we’re launching the #NotAlone campaign that’s all about how members continue to learn from and support one another through life-changing conditions.

What can you expect to see from #NotAlone?
We’ll be featuring some inspirational stories to show how members have felt less alone on their journeys. Here’s a preview into the #NotAlone experiences of Letitia, Nola, and Geof:

  • After Letitia learned about an epileptologist on the site and discovered she was a perfect candidate for surgery, she’s been seizure free for 3 years.
  • When Nola’s multiple sclerosis kept her from accessing her shower, Gary, a member she connected with in the forum, stepped in to help from 3,000 miles away.
  • Geof uses Adderall to combat multiple sclerosis fatigue, but, three days before his prescription was up, his insurance company denied the claim. He turned to the community and everyone who had tracked their own experiences with Adderall.

How can you get involved?
Share your own #NotAlone stories – whether in learning, connecting or tracking. Visit the forum to chat about your experience or chime in on Facebook or Twitter using #NotAlone.

And don’t forget to continue adding your data and experiences on the site. Every piece of information can help change medicine for the better and show someone else that they are #NotAlone.

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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:

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.

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.

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Tackling brain illness, together

Posted September 4th, 2015 by

Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement:

Our brains need answers.

And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a friend or family member, need? It’s not just about researching better treatments or improving the diagnostic process for conditions like PTS and TBI. Rather, it’s about everybody coming together to share their own experiences with brain injury to help raise awareness and increase general knowledge about brain health. Tankmartin, a PTS member of PatientsLikeMe, is the centerpiece of the campaign. Read what he had to say:

If you’d like to participate in the #BrainsNeedAnswers campaign, visit One Mind’s website to learn more about how you can make a difference. And if you’re living with PTS, TBI or another mental health condition, reach out to others like you in the PatientsLikeMe community and find the answers to your own brain questions.

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Talking brain donation with Dr. Deborah Mash

Posted September 1st, 2015 by

Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very little about that which makes us uniquely human” – read her Q&A interview below.

What led you to study diseases of the brain? 

The brain is the next biologic frontier. We have learned more about the human brain in the past twenty years than throughout all of human history. And, we still know very little about that which makes us uniquely human – our brain. I was always very interested in the anatomy and the chemistry of the brain and in disease-related Neuroscience. I consider it a privilege to study the human brain in health and disease.

How would you explain the process of brain donation to PatientsLikeMe members who might be new or uncomfortable with the idea of donating this organ to science?

Brain donation is no different than donating other organs after death. Organ and tissue donations can give life or sight to another person. Transplanted tissues are used in surgeries to repair damaged bones and joints. And these donated tissues are also important for research studies to advance best practices that are used by doctors. The gift of a brain donation supports research studies that will bring about new treatments, better diagnosis and ultimately cures for disorders of the human brain like Alzheimer’s disease, Autism, ALS, schizophrenia and depression, drug and alcohol addiction, bipolar disorder, and multiple sclerosis to name a few.

A brain donation does not interfere or delay a family’s plans for the funeral, burial or cremation. There is no cost to the family to make this final gift.

What brain bank research would you most like to share with the PatientsLikeMe community? Our ALS, MS, Parkinson’s and mental health members might be interested to hear about brain bank research for their conditions.

Studies of the human brain have led to seminal discoveries including the loss of dopamine neurons in Parkinson’s disease and the association of beta amyloid with Alzheimer’s disease. Without examining the human brain after death, these discoveries could not have happened. Medications for Parkinson’s disease were advanced because scientists identified the loss of dopamine that causes many of the symptoms.

We have new technology that provides an unprecedented opportunity to rapidly examine large-scale gene expression of human brain for the first time. This powerful approach can facilitate understanding the molecular pathogenesis of Amyotrophic lateral sclerosis (ALS), a disease that is usually fatal in five years. Motor neurons in ALS undergo degeneration, causing secondary muscle atrophy and weakness. Studies of ALS in human brain are beginning to identify multiple processes involved in the pathogenesis of ALS.

We have yet to fully understand the progression of multiple sclerosis (MS).

This disease is different for everyone who has it. The symptoms it causes and when they flare up is different not only between people but also throughout one person’s life. This makes the diagnosis difficult and complicates treatment. The science behind MS is slowed because there are too few brains donated for research. We get many more requests for well-characterized MS cases and too few brain specimens are available to support the research. This lack of donated brains from MS patients is a barrier for MS research.

Examining the brain after death is important to understand how well experimental treatments are working in clinical trials to see if the drug did what it was supposed to do. An autopsy follow-up on 13 patients from a recent Alzheimer’s drug trial showed that although the drug had cleared the beta amyloid protein, it hadn’t changed the course of the disease — an incredibly important observation needed to advance the direction of Alzheimer’s disease research. The same is true for anyone who participates in clinical trials for any brain disorder.

When you ask people (or their family members) to consider donating their brain to UMBEB or another brain bank, what do you want them to know?

A brain donation is a final gift that contributes to the health and well being of the next generation – your children and grandchildren. It is a very special endowment that lives on by advancing research that can lead to the next scientific breakthrough.

People who want to be organ donors typically sign a card letting others know their wishes, but brain donations require an additional pledge card. This is not always well promoted. How can PatientsLikeMe members who are interested in brain donation obtain the special brain donation pledge cards?

It is important to make your wish known by registering in advance. We make it an easy process and provide donor registration cards for your wallet. You can share this information with your family and friends. You can request information or become a registered donor by visiting us online at or call 1-800-UM-Brain.

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Throwback Thursday: Diabetes and stress

Posted August 27th, 2015 by

Just about two years ago, nearly 600 members of the PatientsLikeMe community completed a survey called the Diabetes Distress Scale (DDS), a 17-item questionnaire which measures the amount and types of problems diabetes can cause in a person’s life. And today, we’re throwing it back to the summary of the results. Here’s what Dr. William Polonsky, the Founder and President of the Behavioral Diabetes Institute, and the co-creator of the DDS, had to say at the time about diabetes and stress:

“I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.”

You might recognize Dr. Polonsky from his subsequent blog podcast and additional research with the WHYSTOP scale. You can view the results of the DDS as a PDF, but check out some of the graphs below.


Have you had an A1C test done in the past year?

If you’re living with type 1 diabetes or type 2 diabetes, find others just like you in the growing communities on PatientsLikeMe. Almost 20,000 people with type 1 or type 2 are sharing their experiences to help others, for good.

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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Posted August 21st, 2015 by

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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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 or call our office at 508-759-9696 or email

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.”

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Food for thought: August (diet) edition

Posted August 12th, 2015 by

Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in the conversations below:

“I truly believe, after 50+ years of fibromyalgia symptoms ranging from pain and depression to migraines, irritable bowel, and low thyroid, that the biggest help of all is to watch my diet, get in lots of fruits and vegetables, and limit sugar and alcohol. I supplement my fruits and veg intake with a whole food based supplement. This has allowed me to reduce medication to thyroid supplementation and a very occasional sumatriptan.”
-Fibromyalgia member on her “detox” diet

“My diet is greens, beans, nuts and seeds. Favorites are kale, spinach, cucumbers, tomatoes, carrots, celery, cauliflower, broccoli, sweet potatoes, black, pinto and kidney beans, lentils, black-eyed peas, cashews, almonds, peanuts and pistachios, flax and pumpkin seeds. I also have occasional sweet potatoes, apples, oranges and watermelon. Grains are consumed about once a week and are usually Farro or Quinoa.”
-Diabetes II member on his vegan diet

“With all my meds and other things I take for depression and the DBS, I can’t say that a gluten-free diet has been particularly whiz-bang helpful. However, I think it may have slowed my symptoms or made me feel better than I should.”

“I am also trying to stay as gluten-free and sugar-free as possible. It is a daunting exercise each day, but may be worth it long-term. I believe that diet plays a huge role in all disease states. All we can do each day, realistically, is take one day at a time and note any positive changes in our PD symptoms to gauge how we are benefitting.”
-Parkinson’s members on their gluten-free diets

If you missed our other Food for Thought posts, read the previous editions here.

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