Creating New Memories this Holiday Season

“What if Christmas, doesn’t come from a store. What if Christmas…perhaps…means a little bit more!”
― Dr. Seuss, How the Grinch Stole Christmas

Growing up, one of my favorite activities in school was around learning and exploring new cultures and how they celebrate holidays. Being so young and not yet having a chance to explore the world around me, I found it fascinating that people were different from what I assumed was the norm.

For example, in Germany, December 6th is St. Nicholas’ Day and “der Nikolaus” comes to the home of small children and brings gifts, such as sweets and chocolate, and puts them into the shoes of the children, who place them by their doors the night before. Then on the night of December 24th, Father Christmas brings presents to the children.

In Argentina, families celebrate starting Christmas Eve with a large family meal following with a fireworks display at midnight, toasting to Christmas. Many families stay up late into the night meeting with friends and family, then they will sleep all of Christmas Day.

To celebrate the New Year, people in Greece hang an onion on their door to symbolize rebirth and in the Philippines, women wear polka dot dresses and men carry coins in their pockets to symbolize prosperity and happiness for the new year.

The purpose of sharing these variations of holiday celebrations is to show that no matter how you choose to celebrate a holiday this year whether it is Christmas, Hanukkah, Kwanza, remember that it is OK to be different. Value time spent with family, not the gifts that are given, or the decorations that are hung. Create new memories this season and don’t be afraid to veer from the holiday norm. As the Dr. Seuss quote illustrates, the holiday spirit cannot be bought from a store, the holiday is what you make of it.

If you are looking for some inspiration from other countries on how to add some new culture to your holiday, check out the Why Christmas webpage to learn more about Christmas Around the World or 123 New Year to learn about New Year’s Traditions and Customs.

How do you plan to make new memories this holiday season?

References:
http://www.whychristmas.com/cultures/
http://www.123newyear.com/newyear-traditions/philippines.html
http://www.businessinsider.com/new-years-rituals-around-the-world-2013-12#in-greece-people-hang-an-onion-on-their-doors-3

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Happy Halloween 2014

Boo! From all of us here at MSAA, we’d like to wish the multiple sclerosis community a safe, happy, and fun-filled Halloween!

By Johnny Martin ecdl (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

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September 2014 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

September Artist of the Month:
Laura Patchen – Pittsford, NY

 Laura Patchen - Alma Mater

About the Artist:

“I was diagnosed with multiple sclerosis in November of 1998. At the time, my daughters were just 8, 10 and 13, and I had a flourishing career as a speech-language pathologist in private practice. I feared that my life would change, and it has, but not quite in the ways I thought it would. I had to stop working in 2005, due to physical and cognitive limitations. It was difficult to give up something I loved to do, but eventually, I’ve found other things, including painting.

The “Alma Mater” is the building my speech classes were held in….a wink to the past, and a fond memory. Life goes on, MS causes changes, but being able to document important memories in acrylics helps me cope.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Laura Patchen and spread awareness of MS and MSAA.

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MSAA Attends 2014 Consortium of Multiple Sclerosis Centers

Several members of the MSAA team traveled down to Dallas, Texas last week for the 2014 meeting of the Consortium of MS Centers (CMSC). The meeting had approximately 2,000 registered participants (the largest CMSC ever) ranging from doctors, nurses and researchers, to nonprofit organizations like MSAA. CMSC Booth

MSAA set up our booth and reached out to attendees to try and ensure that providers are aware of our services and can refer to them as needed.

Some of the partners MSAA works with were also in attendance, including the vendors who work with MSAA on our Cooling program:

Steele Booth

The annual CMSC meeting is one of the best opportunities for education, sharing, and collaboration for professionals who serve the MS community. MSAA staff attended a number of helpful classes, lectures, and interactive sessions on everything from research and study updates related to causes and treatments to efforts to improve quality of life and comprehensive MS care.

Stay tuned to MSAA for more information and knowledge learned at the 2014 CMSC.

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How do we know if we are doing a good job?

by Kimberly Goodrich, CFRE, Senior Director of Development*

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As the debate continues around ratings, ratios, and watchdogs, nonprofits around the country are focused on how to accurately communicate their value. If ratings do not suitably portray the efficiency of an organization’s operations – then how do we know our dollars are being well spent? What is our impact?

Impact, in the nonprofit world, refers to the change in behavior that is a result of the activities and resources provided. For example, an organization provides a class and information on the health risks associated with smoking cigarettes, and finds that 42 percent of attendees stop smoking, resulting in higher scores on overall health measures at their next checkup. If their mission was to improve health scores by decreasing the number of smokers, then this organization can clearly state this as their impact.

MSAA’s mission is to be a leading resource for the MS community and improve lives today. But how do we measure improvement? And how much improvement is enough? In the previous example, if the smoking-cessation classes improved health scores by 50 percent, this sounds great, but what if they only improved by 5 percent…is that enough? If 5 percent kept that person from having a heart attack, would it then be enough?

The improvement of a life is not easily shown on a graph or a financial statement. Sometimes we need to hear the stories that accompany the percentages and the ratios, the revenues, and expenses. The stories that remind us why we do what we do.

“From the bottom of my heart, I thank you – all of you, for helping me to live independently [through MSAA’s free equipment distribution program]. I put my shoes on by myself!! It has been years since I have done that! Thank you for the leg lifter. It lifted my spirits too!” -F from South Carolina

This is not to say that numbers do not matter. Last year, 1,040,554 people accessed our website for information – 814,776 of them for the first time. That’s a significant number of people who can have their spirits lifted and their lives improved.

MSAA has been able to improve these lives because of an increase in the number of generous donors who support us in this mission. We are incredibly thankful for this growing number of people who, through their vital contributions, experience the joy of creating an impact – and improving lives today!

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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Latest Issue of The Motivator Now Available for the MS Community

savas2The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

savas

Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

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Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

 

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Time to Cool Down – Cooling Vests for MS Heat Sensitivity

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Though spring has just begun for many around the country, some individuals may already
be thinking about the upcoming summer months and what that means – heat! For individuals with MS who experience heat sensitivity with their MS symptoms, the idea of facing the heat and humidity the summer season brings can be stressful. But it’s important to know there are some ways you can cool your body down and feel some relief with those hot and humid days. MSAA offers a Cooling Equipment Distribution Program which provides different ice-pack style cooling vests and accessory options that can be worn on the body for relief from the heat. With differing vest styles ranging from those that can be worn under or over your clothing, and kit accessories that include cooling wrist and ankle wraps, the program has something to fit individual needs. For more information, see the MSAA website at http://mymsaa.org/msaa-help/cooling/.

*Please note the program eligibility requirements within the application.

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An Adventure of a Lifetime

Pete snowmobile 2

Breathtaking, serene, and majestic are just some of the many words which come to mind when describing my incredible three-day journey into the wilds of Wyoming and Montana during the 2014 Wyoming/Yellowstone Charity Snowmobile Ride. Sponsored by the Cody Optimist Club and supported by Teva Pharmaceuticals, this year’s 16th annual ride was a huge success raising nearly $50,000 to help support MSAA’s programs and services.
Pete bison

I was honored to represent MSAA and attend this year’s event, which occurred over Super Bowl weekend. It was, without a doubt, one of the most remarkable experiences of my life. As a first-time snowmobile rider and flat-lander from New Jersey, I had to quickly adjust to altitudes of more than 8,000 feet, learn to operate a 550 cc “sled,” and maneuver through some pretty challenging mountainous terrain.

In taking on this new adventure I did my best to maintain pace with the pack, but admittedly went slow and cautious through the hairpin curves. This strategy helped keep me alive (a Pete snowmobilemajor concern of my wife) but also generated some good natured ribbing from the seasoned veterans and a few crazy rookies! I also managed to get my sled stuck in a snowbank. As a result, I earned the coveted “bone” award, which I accepted with considerable pride.

With each day’s passage I was not only struck by the remarkable beauty of the surrounding landscape, but also by the heart-warming beauty of everyone connected to this ride. Led by ride organizer Ed Livingston, the Cody Optimist Club, representatives from Teva and the entire team of dedicated riders all come together once a year to relive fond memories, create new adventures and, most importantly, help improve the lives of people with MS and their families. On behalf of myself and MSAA, I want to express my sincere appreciation and deepest gratitude to everyone associated with the Wyoming/Yellowstone Charity Snowmobile Ride for providing 16 years of unbelievable support and dedication to the MS cause and for giving this Jersey boy the adventure of a lifetime!

MSAA’s Vice President of Programs and Services Peter Damiri has been with the organization for almost 25 years and worked as the director of public relations before moving to MSAA’s programs and services department. He oversees MSAA’s existing programs and services, as well as any new program initiatives. He is also involved with many other aspects of patient education, including coordinating and managing the production of MSAA’s online educational videos and webinars. Mr. Damiri has a bachelor’s degree in communications.

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Welcoming Spring with New Activities for the MS Community

March 20th marks the first day of spring, and for many, you can start to see and feel the
signs that summer is approaching. The days become longer, the air becomes warmer, and the plants begin to grow again. I personally am looking forward to the evenings on the porch after work. – sitting with my feet up, just watching as the neighbors stroll by. The neighborhood becomes active again, with people stopping to say ‘hello’ instead of running inside to beat the cold. Wildlife starts to show their furry faces, popping by the porch to grab some treats.

Over this harsh New Jersey winter, I began to create a list of things that I wished to accomplish once the weather became milder. I welcomed 2014 as the year to try something new, and have pushed off many of these new things until now. Cabin fever has gotten a hold of me and I can’t wait to get out! I plan to become more active, but not in a physical sense. I want to spend more quality time with people and enjoy just being present in the moment. Taking the time to fully invest myself in a task with a friend, without thinking about the thousands of other things I need to do, or rushing off to the next event.Spring email sign-up_edit

With the nice weather, you may also wish to be more active, perhaps joining an MS group,
or attending an educational MS event in your area. MSAA provides free local MS events throughout the country where you can learn about a certain topic, often presented by an MS specialist. The Calendar of Events on our webpage provides information on the type and location of these events. Events are continually being added every day. If you register with MSAA, you can receive information via e-mail or regular mail when an event is coming to your area. Registration is available on our webpage, or, you can reach out to our helpline at 1-800-532-7667 ext. 154 and a helpline consultant will be happy to take your information.

So what do you look forward to most in the spring? Do you have any plans or things you would like to try?

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Multiple Sclerosis Awareness (when you might not want people to be aware)…

Diagnosis Awareness Blog Post Image

March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”

As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.

There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.

So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?

Infographic for blog

On social media sites:

Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.

In person:

If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.

In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.

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