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.

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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 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.”

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