MSAA Presents S.E.A.R.C.H.™ Live Webinar

msaa-search-graphicWhile having more than a dozen FDA-approved treatments for relapsing MS is very encouraging, learning about the therapies and knowing what questions to ask your doctor can be very challenging. Because of this, the Multiple Sclerosis Association of America (MSAA) created its S.E.A.R.C.H.™ initiative several years ago and recently updated the program with a new booklet, workbook and now an upcoming live webinar!

Designed as a memory aid, the S.E.A.R.C.H.™ acronym represents six key areas that should be considered when “searching” for the most appropriate MS treatment. We invite you to register for our free, live webinar, How to S.E.A.R.C.H.™ for the Right MS Therapy for You!, on Wednesday, October 19, 2016 at 8:00 pm Eastern.

In this live, one-hour webinar, MS expert Dr. Carrie Hersh will:

  • Review the current landscape of MS therapies and those on the horizon
  • Discuss the importance of having a good doctor-patient relationship
  • Explain the S.E.A.R.C.H.™ acronym and how it helps people remember the six key topics to discuss with their physician when deciding on a treatment
  • Provide effective strategies for staying on treatment

Following the presentation, participants can engage in a Q & A session with Dr. Hersh from questions submitted through the S.E.A.R.C.H.™ webinar’s live chat feature. For more information about the S.E.A.R.C.H.™ initiative, please visit our website.

This webinar, along with other recently updated S.E.A.R.C.H.™ materials, has been made possible with support from EMD Serono and Sanofi Genzyme. MSAA is solely responsible for the development of S.E.A.R.C.H.™ and its content.

Share

Fall Celebrations

fallWell, Fall is finally here even if in most parts of the country it doesn’t feel like it.  Most people associate Autumn with its two main holidays: Halloween and Thanksgiving.  I know that if you were to play a word association game with me, I’d tell you that Fall makes me think of warm apple cider, jack o’lanterns, pumpkin pie, turkey and trick or treating.  All those things are connected to the holidays.

I thought to myself that there had to be more to the season.  Guess what?  There is so much more to celebrate.  I came across a website (http://www.nationaldaycalendar.com/october/) that lists all of the “National Days” that you might hear mentioned on the morning news or radio.  Some are serious, but most are a bit silly.  I, for one, don’t think you can have too much silly in your life.  So, while there were so many for the season, I thought I’d share my favorites for October.

  1. October 4th – National Taco Day. Have Mexican food for lunch or dinner to celebrate!
  2. October 8th – National Fluffernutter Day. Make yourself a peanut butter and marshmallow fluff sandwich.  If that’s not your speed, celebrate National Pierogi Day instead!
  3. October 10th – National Kick Butt Day. This is the day to give yourself a kick in the pants and get yourself moving on something you’ve been meaning to do for a while.
  4. October 12th – National Bring Your Teddy Bear to Work Day. Get all of your co-workers involved and have a slumber party!
  5. October 14th – National Take Your Parents to Lunch Day. Make sure your kids know you expect them to celebrate this day!  And, have the pie or ice cream at the end because it’s also National Dessert Day!
  6. October 17th – National Clean Your Virtual Desktop Day. This might be the easiest cleaning chore of them all! Click and clean!
  7. October 18th – National Chocolate Cupcake Day. Buy yourself a chocolate cupcake as a reward for all of the hard work you did yesterday!
  8. October 22nd – National Nut Day. Peanuts, walnuts, almonds, pistachios…so many nuts and only 24 hours to celebrate!
  9. October 28th – National Breadstick Day. I wonder if Olive Garden knows about this day?  It might be fun (and tasty) finding out!
  10. October 30th – National Candy Corn Day. Finally, a reason to dig into the Halloween candy early!
  11. October 31st – National Knock Knock Jokes Day. Have some fun with the trick or treaters by telling funny and corny knock knock jokes all day.  You’ll have a captive audience because they’ll want the candy!

This website serves as a reminder that there is always something in life worth enjoying.  Plus, there is no law against you creating your own day of fun for your friends and family.  In the end, it’s just important that we, as the website’s motto says, “Celebrate Every Day”.

 

Share

Dollars and Cents? No, Hours and Minutes

When someone mentions the word budget most people instantly think of dollars and cents. But budgeting our time and commitments is just as much work as budgeting our money, and even more difficult for some (myself included). Budgeting to fit in the pull of work, family, friends, school, volunteer activities, participation in groups… regular sleep hours… it takes a lot. I’m a juggler (not really), but I often fill my proverbial plates with more than I should and from time to time something takes a fall. All the good intentions aren’t enough to always keep things going. The start of fall, with all its changes and starting of new activities and programs has been a good time for me to look at all the things in my life that vie for my attention and decide how best to budget out my commitments. Take stock of the things most important to me and learn to say “No” to those that I just can’t fit into the 24 hours a day I’ve got.

catinthehat-214x300Taking the time to really asses our time and commitments can be more difficult than it sounds. If like me you like to stay busy, be involved and take on new things, you’re looking for ways to do it all. Be at the soccer games and make the deadline, help decorate the hall and run the meeting, work on projects and help a friend pick out their wedding favors. While keeping busy and involved can be exciting and interesting it can also take its toll. Realizing that while we’d love to juggle all the objects that life has to offer, it’s best to decide which of them is most important and put the others down takes thought. It takes being honest with ourselves that we have limits and that our time isn’t infinite. Choosing the activities or tasks that are the most important to us and saying no to others. Budgeting with money is important to make sure the bills get paid and there’s something left over to save. But budgeting our time is important to make sure we have something left over. To ensure we don’t burn the candle at both ends and end up missing things, moments or chances that we’ll regret. Yes, I want to be there for my friends and family, do well at work and help where I can but there are times when not maxing out my budget will save me from running in the red in more than just my bank account.

Share

MSAA Joins Revlon 2016 Challenge

MSAA is excited to be a part of the Revlon LOVE IS ON 2016 Million Dollar Challenge!  From now until October 26th, MSAA and other organizations focused on women’s health are competing to raise the most money for a grand prize of a $1 million donation to their cause. In addition to the grand prize, throughout the fundraising competition, there will be mini bonus challenges with $1.4 million in additional prizes for the winners of these weekly or daily challenges.

revlon-love-is-onYou can get involved and help MSAA win the $1 million donation to fund our free programs and services including: cooling vests for heat sensitive individuals, MRI assistance, toll-free Helpline staffed by trained specialists, assistive devices, in-person educational events, award-winning videos and publications, and much more.

How You Can Help

Help MSAA improve more lives (and “Love”!) in the MS community today, by spreading the word about the Revlon LOVE IS ON 2016 Million Dollar Challenge!

Share

Warm Panzanella

MS Conversations Recipe of the MonthAutumn is almost here!  The air is getting cooler and the leaves are starting to fall.  When you go to the store, it seems that everything is apple or pumpkin spiced. Fall is a great time to make delicious dishes, savory sides and fruity desserts that will warm your heart and soul. Below is a recipe idea that is easy to make and is delicious to eat as a side dish or even a meal.

Ingredients:

Butter, for greasing and to dot the top
1/4 cup olive oil
2 cloves garlic, thinly sliced
2 peppers-any ones you like (the sweeter the better)
1 red onion, chopped
1 pint cherry tomatoes
Salt and pepper
8 eggs
1 pint cream or half-and-half
1 1/2 cups grated Parmesan cheese
1/4 cup fresh flat leaf parsley, chopped (you can also use dry herbs)
Small handful fresh basil leaves, torn or sliced  (you can also use dry herbs)
6 cups chopped or torn stale bread

Directions:

  1. Grease a casserole dish with some butter, set aside.
  2. Heat a large skillet over medium-high heat with the olive oil. Add the garlic, peppers, and onions together and then stir.
  3. Cook until tender, about 5 minutes.
  4. Add the tomatoes and season with salt and pepper.
  5. Remove from the heat and cool.
  6. Whisk together (in a separate bowl) the eggs, cream and half of the cheese, add parsley, basil and some more salt and pepper.
  7. Layer the bread and cooled vegetables in the casserole dish, it will mound up a bit. Pour the egg mixture over top of the casserole and top with the remaining cheese.
  8. Add a few dots of butter.
  9. Cover and chill overnight.To serve, bring the casserole to room temperature. Then bake at 375 degrees until cooked through. It will need to cook for about 1 hour. Serve warm.  Serves 6-8 people.
Share

Special Swim for MS Swimmer Honored by the Military

Almost all of our Swim for MS participants have had some kind of personal connection to multiple sclerosis – whether a family member was diagnosed, a friend, or they themselves have MS.  In this way, Team DragonFLY Captain, Courtney Evers, is no different.  When her mother was diagnosed in 2005, Courtney and her family turned to MSAA for information about MS.  After spending years on our website using MSAA resources and repeatedly seeing information about our Swim for MS program, Courtney decided to start her own.  “It was something I could not only do for my Mom, but that she could be a part of, too,” says Courtney.

Courtney’s mother (left) swam the most distance of the team last year!

Courtney’s mother (left) swam the greatest distance of the team last year!

What does make Courtney Evers different from other Swim participants is that she was recently awarded the Military Outstanding Volunteer Service Medal for her volunteering efforts, including her years as the captain of her Swim for MS events.  Since 2011, Courtney and her teams have raised more than $7,500 for the MS community by swimming in New York, Hawaii, and everywhere in between.  When asked about receiving this special honor, Courtney said:

“The Swim for MS part of my MOVSM was by far the most meaningful, because it was something that really ‘hit home’.  Not only was my team helping raise awareness, but the funds raised were actually going to those that needed it with MS.”

Please join MSAA in thanking Courtney for her service to her country and for her commitment to the MS Community and improving lives today!

unnamedTo learn more about starting your own Swim for MS, please visit SwimforMS.org.

Share

Is it That Time of Year Already?!

school-bus-back-to-schoolSo this week marked the start of many students heading back to school and the unofficial ‘end’ of summer with the fall season being just around the corner. This time of year usually generates many nostalgic feelings; how it felt having to go back to school, which was sometimes a drag at first but eventually turned into excitement to learn new things, the change in routine and schedules, and the countdown to the holiday season. Even just the colors and smells of fall have the potential to bring about joyful feelings—it can be a very pretty and festive time of year.

For some people this week may represent new beginnings and changes, for others it may signify an anticipated change of season with teasingly cooler temperatures being just around the bend (hopefully). For others it may just represent a hope for change and new things to come. This particular week and time of year doesn’t necessarily look or mean the same to each person and it doesn’t have to; everyone goes through different things at different times and holds unique perspectives towards it. It’s more about finding what is special or important to you and holding onto that—knowing what feelings are prompted or what memories are beckoned when you experience time and season changes during the year. It’s a chance to create new memories, make adjustments to change, prioritize your needs, and most of all, to self-care—because there is only one you, and you deserve the most that time has to offer.

Share

Happy Labor Day

Happy Labor Day StarsMSAA’s offices will closed on Monday, September 5th, in observance of Labor Day. We will be back to normal operating hours on Tuesday, September 6th. 

Share

Stories to Inspire

Find Out What “Moves” Joe Revello

Joe Revello tests out his new Alinker, with its inventor Barbara Alink

Joe Revello tests out his new Alinker, with its inventor Barbara Alink

“It’s all about helping people,” noted MSAA volunteer Joe Revello of Plainfield, NJ. “Whether it’s raising funds, helping at an event or just having that conversation to build awareness, any effort in the fight against MS is critically important.”

Joe, who was diagnosed with MS in 1995, has been an active volunteer in the MS community for more than a decade. Recently, with the help of his sister-in-law, Joe organized a very successful school walk for MSAA and has now joined our newly formed volunteer task force aimed at expanding local, grass-roots fundraising efforts to support our signature programs and services.

But beyond his fundraising successes, Joe’s commitment to helping people with MS continues to grow as he now embarks on a much different and very personal crusade. In fact, you can say it literally “moves” him toward a new level of advocacy.

“Walking has been my biggest challenge over the years,” said Joe. “I can’t walk unassisted, my balance is horrible, and I experience pain in my hands and wrists when using crutches. Using a walker has me bent over, tightens my back and doesn’t allow me to walk as far as I want to. I also tried using a scooter but it wasn’t for me as I wasn’t moving and I didn’t want my physical condition to decline.”

Never shying away from a challenge, Joe knew there had to be a better option to help meet his mobility needs, so he turned to … the Internet – of course! “Believe it or not I typed in the words: ‘Futuristic Walking Devices’ and up came this product called the Alinker. I was immediately impressed by its design and function. The more I read about it, the more I knew this could be something that could change my life.”

Produced in the Netherlands, the Alinker is described as a walking-bike that allows users to sit upright so they are eye-level with their environment. Although excited by his discovery, Joe’s enthusiasm was soon tempered when he spoke to the inventor, Barbara Alink, and learned the product was not yet in production and only available as a prototype. However, Joe and his wife Denise didn’t want this possible opportunity to pass them by and ventured off to the Netherlands to meet Barbara and test out the prototype.

“I was on the Alinker that day for four hours and walked two miles,” noted Joe. “I was not fatigued. I moved at my own pace, independently and could stay connected with my companion. I could have never done that with a walker or crutches.”

Unfortunately, Joe and his wife had to leave the Netherlands without the Alinker. A short time later, Joe obtained his own prototype to use temporarily until the company, Alinker Inventions, could begin the manufacturing process. Through a grass-roots crowdfunding campaign in the Netherlands, the company was able to produce a limited number of Alinkers and Joe became the first United States citizen to own a finished walking bike, at a cost of $2,000 US. When hearing about the company’s plans to establish a similar fundraising campaign to help bring this mobility device to people in the United States, Joe immediately put on his MS advocacy hat and went to work.

“My goal is to make the entire MS community aware of this product,” said Joe. “Obviously everyone’s MS is different and people have their own, unique mobility needs. But I would like to see people who are mobility challenged like me have the same life changing experience as I have had with the use of the Alinker.”

“After training, I can walk using both legs more symmetrically on the Alinker and I have built up muscle where I hadn’t before when using other mobility devices. Plus people now call me the cool guy on the yellow bike!”

Editor’s Note: Please know MSAA does not recommend or endorse any particular product or service. This article is intended for general informational purposes only, and it does not constitute medical advice. For diagnosis and treatment options, you are urged to consult your physician.

 To learn more about this product, please visit http://www.thealinker.com/.

Share

My MS Journey – Jessica’s Story

One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS.  Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?”  However, these questions are never limited to someone recently diagnosed with MS.

My MS Journey is a resource for people at all different stages of their life with multiple sclerosis.  There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information.  All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.

Check out Jessica’s story above for how she felt after being diagnosed with MS.

Share