28 posts tagged “neurological”

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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Getting to know our Team of Advisors – Kitty

Posted June 18th, 2015 by

Kitty represents the mental health community on the PatientsLikeMe Team of Advisors, and she’s always ready to extend a helping hand. She’s a social worker who specializes in working with children in foster care, and below, she shares how her own journey with major depressive disorder (MDD) has helped her truly connect with and understand the needs of both her patients and others.

About Kitty (aka jackdzone):
Kitty has a master’s degree in marriage, family and child therapy and has worked extensively with abused, neglected and abandoned children in foster care as a social worker. She joined PatientsLikeMe and was thrilled to find people with the same condition who truly understand what she’s going through. She lost her job as a result of her MDD, which was a difficult time for her. Kitty is very attuned to the barriers those with mental health conditions might face, and has great perspective about how to be precise with language to help people feel safe and not trigger any bad feelings. Kitty is passionate about research being conducted with the patient’s well-being at the forefront, and believes patient centeredness means talking with patients from the very beginning by conducting patient surveys and finding out what patients’ unmet needs are.

Kitty on patient centeredness:
“To me, it means that it’s all about the patient from start to finish. In the beginning, it’s talking with patients, conducting patient surveys and reading any written material that would be helpful in order to find out what patients are most wanting and needing and not getting. In healthcare, this would translate to a doctor engaging with a patient in a way that is especially helpful for the patient. This may require asking a question a certain way in order for the patient to answer truthfully and to feel that their doctor really cares about them as a person. (I was fortunate enough to have had one primary doctor like this for many years and it makes a huge difference!) It puts the focus on that particular patient at that moment and requires empathy and understanding (and not just going through the motions) in determining what is best for that patient.

In the area of research, the same is true. Research of this kind is done to improve the client’s physical and/or mental life in some way. Any research should be done with the patient’s well being at the forefront. Questions should be asked in a way that will lead the client to be very open about their experiences. The client should be fully informed regarding any research in which they participate and be asked at the end if there is anything that has not been covered that they have questions about. They should be informed of the results of the research afterwards and perhaps be allowed to give their thoughts about the findings.”

Kitty on being part of the Team of Advisors:
“A year ago, when I read that PatientsLikeMe was putting together a Team of Advisors, I didn’t hesitate to apply. I wanted to be part of something that had helped me a great deal during a part of my life when I was the most depressed and struggling. When I was eventually chosen to be on the team, I was and have continued to be very honored. I feel such a strong affiliation with PatientsLikeMe and want to be able to help others in anyway that I can. During this past year, I’ve been able to participate in helping to compose a patients’ rights handbook and be interviewed by a researcher regarding how patients view clinical trials. Being on the Team of Advisors has given me the chance to become an advocate for myself and others. It is something that means a lot to me and something that I enjoy doing–and I think it’s something I will continue to do in whatever capacity I can throughout my life.”

Kitty on helping others:
“From the very first day that I joined PatientsLikeMe several years ago, the website has meant a great deal to me. Most of the people in my life did not really understand what I was going through. At times, they thought I really could have done more, but that I was just being lazy. When you are suffering from MDD, this viewpoint from others only increases your depression. I didn’t know where to turn. What I found on PatientsLikeMe were others who were also suffering from MDD and were experiencing the same symptoms and challenges as myself. As I began posting on the site about what I was going through and how depressed I was feeling, I felt somewhat better just by being able to express myself and even more so when others with MDD began reaching out to me with advice and encouragement. I can really say that this made all the difference to me in the world.

After awhile, I made it a point to also reach out to encourage others. I noticed that some people seemed to be very depressed on a daily basis with very little hope and I felt I had to reach out to them in some way. I began responding to their posts. A lot of times I just said that I was sorry that they were feeling bad, as I didn’t know what else to say. I hoped that just this much would encourage them. I didn’t want to be overly upbeat if that wasn’t how they seemed to be feeling, because I felt this was a disservice to them. I felt that the more I could just be there for them right where they were and with how they were feeling the more I could be of help.”

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