MS Clusters – How many of your friends and/or family also have MS?

There has been a great deal of research examining the role of genetics in the development of multiple sclerosis over the years. The current understanding is that MS is not directly inherited, however, genetics appear to play a role in increasing a person’s risk for developing MS.1 Experts currently believe that those who develop MS have inherited something in their immune system that makes them more reactive to whatever is causing the immune system to attack myelin. It is possible that something in our environment, potentially viral or bacterial, triggers the autoimmune response that leads to MS in a person who has an inherited susceptibility in their immune system. Because so many questions remain, we decided to ask our Facebook community if they are a part of an MS “cluster,” where multiple friends and/or family members have MS. Over 170 people responded, and here’s what many of them had to say!

Several people in my family have MS

  • My sister had MS. I have it now. She had PPMS and I have PPMS. There were 7 MS cases within 2 blocks of where I grew up. I have heard that genetics loads the gun and the environment pulls the trigger.
  • My dad and his brother and sister all have MS; that’s 3 out of 5 siblings.
  • My sister and I were both diagnosed with MS this year, one month apart. Interestingly my sister is adopted, so we are not genetically related. We both want answers. It’s so tempting to blame something environmental. No one else in family has ever had it, and my twin brother is fine.
  • I have two kids and two cousins with MS!!
  • Two of my maternal grandmother’s cousins, my mother, her sister, my father and now myself. We all live in Victoria, Australia, which is quite cold and has higher rates of MS and Vitamin D deficiency than almost all the rest of the country. ‪None of the neurologists we see had ever come across such a “cluster” before
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  • ‪I’m the 6th cousin on my father’s side of the family to be diagnosed with MS.
  • My dad, his sister, my sister, my half sister and I all have MS. That’s 3 of 5 kids (2 boys, 3 girls) with the same father that have MS.
  • My aunt has it and my great grandmother died from it. I believe my lifestyle in my 20’s was the ultimate trigger. But eating a mostly vegetarian diet and drinking tons of green tea has helped me in more ways than I could have hoped for.
  • I’m the third generation in my family to have MS.
  • I have MS, was diagnosed in ’87, but in retrospect I’m pretty sure I’ve had it since my early 20’s. In 2005 my daughter was diagnosed at 25. My family was puzzled that it isn’t supposed to be hereditary! Then in 2007 my husband and her father were diagnosed. He and I both grew up in the same town; maybe its genetic and maybe environmental?
  • I have 2 cousins on my mom’s side that also have MS. I’m the 3rd to be diagnosed.
  • I am the 4th in 3 generations that we know of.
  • I’m 55 and I’ve had it since age 30. We think my grandmother on my dad’s side had it, but she passed away in 1983. Now one of my daughters has it and one of my nieces has it; that’s it for now.
  • My daughter was diagnosed at age 16 years old, and 5 years later I was diagnosed as well.
  • My mother’s cousin, first born, had it. Her brother’s first born had it, and I, her first born have it; my brother’s first born has it. All were/are males except for me. Is there a first-born child link?
  • My sister and I both have MS, and we are the third generation to have this in our family.
  • My friend has 69 first cousins, and 19 of them have MS.
  • I have MS, my mother has MS, and her mother had MS and died from complications when she was 46 years old.

There are a lot of people who live near me who have MS

    • There isn’t a “cluster” in my family, but there is in my neighborhood. The house on left, house on right, house across street, and me – each has someone with MS. That is my whole block.
    • My sister had MS, but no one else in the family going back 10 generations had it. HOWEVER, a woman on the next farm had MS and now a young woman on the closest farm to ours has been diagnosed with MS; that’s in a community of 40 people.
    • I’m the only one in my family. Three of us from a very small country town who went through primary school together have it.
    • My co-worker had MS, then I had it, then another co-worker got diagnosed…all while active duty Air Force serving in same building. It’s a very interesting connection.
    • There’s a cluster here in northern California.
    • I grew up in the town of Tonawanda in Western NY. It’s located in between Buffalo and Niagara Falls. Many people I went to school with have MS.
    • I don’t have a family cluster, but 3 of us, all female, same age, lived on same block within 4 houses of each other, have MS. There could be more that we just were not in touch with after moving away. We were all diagnosed in 2005.

I’m the only one in my family who has MS

      • No one in my family on either side has MS.
      • I have it, but I’m the only one in my family. I was told that MS wasn’t hereditary.
      • I am the only one with MS. Diagnosed at 33 and I am 40 now. Praying no one else in my family ends up with it.
      • I am the first in my family. We went way back and couldn’t find anyone.
      • My dad was the first and only in our entire family.
      • I am the only one in our huge family.
      • I was told that MS is not hereditary?
      • I was told that MS runs in the family, but usually skips a generation; I am the first on both side of the family to ever be diagnosed with MS. I was diagnosed in 2007 when I lived in CO – which has the most people to be diagnosed with MS.

There are multiple autoimmune or neurologic diseases in my family

    • My mother has Crohn’s Disease. My youngest son has Type 1 Diabetes, my eldest has allergies, and I have MS.
    • I’m the only one with MS, but I also have neurofibromatosis (NF). I have over a dozen family members with some type of neurological problem. I have a nephew who has NF and Parkinson’s, and several family members who have epilepsy. I am 58 and was diagnosed with MS about 14 years ago. I’ve had NF all my life. I passed it on to my son and daughter.
    • I am the only one in my family to have MS, but my sister has Lupus.
    • My father’s three cousins (MS), his sister (ALS), he (peripheral neuropathy), my husband (MS), our daughter (MS – diagnosed at 10!)!!
    • As far as we know, my middle child, my daughter, is the only one to have it. My mother’s family all came from Sweden, which is a hotbed for MS. I don’t fully understand a lack of Vitamin D being a factor. We live in PA where we do get a lot of sunshine.
    • Four out of 6 of my siblings have MS, and my mother died from ALS.
    • My grandma had MS, my aunt has Lupus, and I have Neuromyelitis Optica.
    • I was diagnosed a year after a maternal cousin was diagnosed with MS. My cousin’s mom had severe RA, and my mom’s fraternal twin has Lupus.

Reference:

1. Aronson KJ. The epidemiology of multiple sclerosis–who gets MS and why? In: Kalb R, ed. Multiple Sclerosis: The Questions You Have – The Answers You Need. 5th ed. New York, NY: Demos Health; 2012:21-27.

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Swim for MS News – October 2013

The October 2013 Winner is…
Congratulations, Auburn Swimming and Diving – BLUE TEAM 2013, for being the top Swim for MS fundraiser during the month of September!

Check out Auburn Swimming and Diving – BLUE TEAM’s page and support their Swim!

Thumbs up - Benefits of SwimmingBenefits of Swimming:

  • The ability to do more with less
  • Increased muscle tone & strength
  • Improved flexibility
  • A healthier heart
  • Controlled weight
  • Improved cholesterol
  • Lower risk of diabetes
  • Lower stress

Be a part of Swim for MS – please register today!

Swim for MS swimsuits from HARDCORESWIM

Swim for MS Swimsuit Partnership:
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits. Two different Swim for MS styles are available for men and women. Check out the Swim for MS page on their site and order your suit today!

Spread the Word:
Once you start your Swim for MS, don’t forget to post pictures of your Swim on social media and tag MSAA!

Facebook: facebook.com/MSassociation
Twitter: @MSassociation
Use hashtag #SwimForMS

In Other News:
Please visit our Swim for MS News archive on SwimForMS.org for more information on our CaféPress site, as well as our Swim for MS partners, Pura Vida and HARDCORESWIM.

If you have any questions, please contact us at swim@mymsaa.org.

Thank you for your support, and happy swimming!

Multiple Sclerosis Association of America (MSAA)

#SwimForMS – use this hashtag when talking about Swim for MS on Twitter!

Tweet about your Swim for MS!

Swim for MS is supported by our National Sponsor, Genzyme Corporation; our Distribution Sponsors including SwimOutlet.com and Fitter Faster Tour; and our Swim for MS partner, HARDCORESWIM.

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Swim for MS News – September 2013

The September 2013 Winner is…
Congratulations, Nick Fedirko, for being the top Swim for MS fundraiser during the month of August!

Check out Nick’s Swim for MS page

Dive into action and Swim for MS!

Swim for MS - Multiple Sclerosis Association of AmericaSwim for MS is our national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support the Multiple Sclerosis Association of America (MSAA). Swim for MS is unique because MSAA does not plan the event – you do! As a Swim for MS volunteer, you have the opportunity to create and arrange your own special Swim activity. You can participate individually or recruit other swim enthusiasts to form a team.

You’ll find many fun and creative ways to dive into action and raise funds for MS. Popular Swim for MS activities fall into two main categories:

  • Go the Distance – individuals or teams set a challenge goal to swim a certain amount of laps, distance or time during one day or over a set period of time (i.e. swim 500 laps in 30 days to raise $1,000 for MSAA)
  • Make a Splash – participants turn fun pool activities into exciting fundraisers such as pool volleyball tournaments, cannonball jumping contests, and more! You can even dedicate your next birthday party as a Swim for MS Pool Party.

Be a part of Swim for MS – please register today!

Swim for MS swimsuits from HARDCORESWIM

Swim for MS Swimsuit Partnership
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits. Two different Swim for MS styles are available for men and women. Check out the Swim for MS page on their site and order your suit today!

Spread the Word
Once you start your Swim for MS, don’t forget to post pictures of your Swim on social media and tag MSAA!

Facebook: facebook.com/msassociation
Twitter: @MSassociation
Use hashtag #SwimForMS

In Other News
Please visit our Swim for MS News archive on SwimForMS.org for more information on our CaféPress site, as well as our Swim for MS partners, Pura Vida and HARDCORESWIM.

If you have any questions, please contact us at swim@mymsaa.org.

Thank you for your support, and happy swimming!

Multiple Sclerosis Association of America (MSAA)

#SwimForMS – use this hashtag when talking about Swim for MS on Twitter!

Twitter icon Tweet about your Swim for MS!

Swim for MS is supported by our National Sponsor, Genzyme Corporation; our Distribution Sponsors including SwimOutlet.com and Fitter Faster Tour; and our Swim for MS partner, HARDCORESWIM.

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Swim for MS News – July 2013

The July 2013 Winners are…
Missy Franklin Autographed Photo:
Congratulations Julia, for being the top Swim for MS fundraiser during the month of June!

Swimsuit Prize:
Congratulations Kara for winning a Swim for MS swimsuit! This suit was designed and made by HARDCORESWIM!

How do I Swim for MS?
Go the Distance – Individuals or teams set a challenge goal to swim a certain amount of laps, distance, or time during one day or over a set period of time.

Make a Splash – Participants turn fun pool activities into exciting fundraisers such as pool volleyball tournaments, cannonball jumping contests, and more!

How do I receive Community Service Credit?
If you or someone you know needs to fulfill community service hours – Swim for MS! Swim for MS is a “virtual volunteer opportunity” – this means that you contribute as much time as you can – when you can!

  • Register online at SwimForMS.org.
  • Set your challenge goal – Swim 100 laps in 10 hours and raise $150.
  • Ask your friends and family to support your cause.
  • Keep a log of hours swam and track your progress on your page.
  • Once completed, email swim@mymsaa.org to receive a confirmation letter of your hours!

Swim for MS Swimsuit Partnership
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits! HARDCORESWIM is based in Southern California and all items, from start to finish, are produced in the USA. Two different Swim for MS styles are available for men and women! Check out the Swim for MS page on their site and order your suit today!

In Other News
Please visit our Swim for MS News section on SwimForMS.org for more information on our CaféPress site, as well as our Swim for MS partners, Pura Vida and HARDCORESWIM.

If you have any questions, please contact us at swim@mymsaa.org.

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Swim for MS Update

Don’t miss your chance to be a part of the action!

Dive into Swim for MS today!

MSAA is pleased to announce a new prize for participants in the Swim for MS program: beginning in March, the top fundraiser for the previous month will receive an autographed photo of Missy Franklin! (Our first monthly prize will be awarded in March to the participant who has the highest Swim for MS fundraising total for the month of February.)

Missy Franklin MSAA Swim for MS Ambassador

Missy Franklin MSAA Swim for MS Ambassador

Sign up today to begin your Swim for MS and your chance to win an autographed photo of Four-time Olympic gold medalist and MSAA Swim for MS Ambassador Missy Franklin!

About Swim for MS

Swim for MS is a national fundraiser in which volunteers are encouraged to create their own swim challenge while recruiting online donations to support MSAA and the MS community. You can participate individually or recruit other swim enthusiasts to form a team.

Participation as easy as 1-2-3!

  1. Create your swim activity
  2. Set your challenge goal
  3. Recruit online donations

To register, please go to SwimForMS.org. After you complete your registration, select “Access your Participant Center Now” to create your online fundraising page! To inspire you, please check out our Swim for MS Profiles for examples of how to create your Swim for MS challenge

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Rock Out MS and Sharkfest San Diego

After carefully mapping out the direction of Active with MS, I finally decided the first event I wanted to do to inspire MS patients to be active would be an open water swim and that swim would go to benefit MSAA. After going to a MSAA event in San Diego, I learned MSAA was recruiting volunteers for a swim fundraiser. I grew up a swimmer, I love open water races, it was too perfect to not participate. After looking at the list of local races for the year in San Diego I decided on participating in Sharkfest on October 14th, a race that goes from the San Diego Convention Center to the Coronado Side of the Coronado Bridge, a distance of a little over a mile. While this should be a fun event for people to go to I really wanted to create an additional event that would allow me to meet more new people and have fun with my family and friends. To accomplish this I am putting together a benefit concert on October 12th to serve as the main fundraiser for my swim.

The concert will be at Robbie’s Roadhouse Bar and Grille located at 530 N. Coast Hwy 101 Leucadia, California 92024. The talented Jesse Cox Syn-Drum will be providing live music from 6:30-10:30 and there will be a silent auction. In addition the restaurant will be donating a portion of the money spent on food and drinks to the cause as well. If you are in the area come by and say hi and join in on the fun. I’m really looking forward to this event, I’m expecting a lot of people and I really want this fundraiser to be successful for MSAA. If you can’t make it please still consider donating to my race at

http://support.mymsaa.org/site/TR/Swim1Mile/General?px=1548101&pg=personal&fr_id=1100

MS will never get the better of me, I am determined to stay strong and beat it. I hope you feel the same way. I have MS right now but I still believe there is a chance that one day I won’t. In the meantime I will continue to stay active and create events like these for MSAA and hopefully find more people to join me.

No matter how you help the MS community, thank you. Stay active, Stay positive, Go forth and beat MS.

 http://activewithms.com/

 

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Presenting MSAA’s Artist of the Month for August 2012

MSAA is very proud to present our 2012 Art Showcasecelebrating the work of artists affected by MS.

August Artist of the Month:

Margie Kapaczewski – Philadelphia, PA

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<p>House on a Lake by Margie Kapaczewski

 

 

 

 

 

 Change in life is inevitable. However, we create time stamps along the way…painting is my time stamp. It is the moment that I become intentionally lost in my thoughts and inspiration. I create my vision and stamp it onto a canvas, a paper, or a piece of material to keep forever.

With MS, memory is a gift…without MS, memory is still a gift. Art is my visual memory where I can reflect on a time with fondness or be triumphant as I was strong enough to make it through.”
Read more

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

 

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The London 2012 Olympic Games Begin Tonight!

Celebrate the Olympics with Swim for MS

MSAA’s Swim for MS Pool Party

This Friday, July 27, the Summer Olympic Games Opening Ceremonies in London will usher in 17 days of competition among 204 countries.

Among the most exciting events to watch will be the swimming and diving events, especially with the strong team that the USA has put together. The first swimming event is scheduled to begin on Saturday, July 28.

As a great way to show your patriotism, cheer on the USA, and help support MSAA, we are encouraging volunteers to host a Swim for MS Pool Party during these next exciting two weeks of the Olympic Games.

Once signed up for your Pool Party, please be sure to take pictures and post them to MSAA’s FacebookTwitter  or YouTube  pages!

If you are looking for ideas to host an Olympic-themed Pool Party – check out MSAA’s new Pinterest Page.  You will find links to games, food, and other great tips for making your Swim for MS Pool Party a great success!

Please sign up today by visiting http://msaapoolparty.org. Go Team USA!

About Swim for MS Pool Party:

The Swim for MS Pool Party is part of MSAA’s popular Swim for MS program. It is a one-day event volunteers host in their own backyard or community pool.

To plan a Swim for MS Pool Party, volunteers first select a date, then select an activity – such as cannonballs, swimming laps or even a game of Marco Polo – and finally collect pledges from friends and family for the activity chosen.

It’s as easy as 1-2-3!

Pick a Date,

Join the Party,

100 Days to Make A Difference!

#SwimForMS

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