Tag Archives: fundraiser

Lymphie Stories: Mamie F. and her Lift 4 Lymph Fundraiser

Submitted by Mamie F., August 2012.

It seems my story is very similar to others that have primary LE. My symptoms presented at around 24. My legs swelled horribly from the knees down. My doctor did not think much of it and attributed it to a venous problem. After about a year of complaints I finally got a sonogram of my veins – all was fine and then panic set it. I had every test possible and no one could tell me anything other than I was fine. I was finally diagnosed at 27, 3 years after the onset. I call that my JFK moment, I remember everything about that moment. I never thought that what I had would be with me forever I naïvely thought that once I figured out the issue I would pop a pill or get surgery and be fine.

The most frustrating thing is the lack of knowledge there is about the Lymphatic System and related complications. I also find that most people don’t get it. The reaction is  - so you swell a little no big deal. But we all know it is more than that. There are major self-esteem issues, discomfort, and not knowing what the future holds are all part of dealing with this condition.

Like everyone else I have my days where I feel sorry for myself but for the most part I look at the bright side. Going through this has made me a more empathetic person, a stronger person, it has also forced me to take responsibility of my health.

I am a Crossfitter and that is pretty much what I do in my spare time. Crossfit is a high intensity program. It’s not only a great way to stay in shape, the community is incredibly supportive. On September 8, I am hosting a fundraiser for the Lymphatic Research Foundation (LRF).  The event will involve a Crossfit Competition and participants will pay to participate. The winners will receive prizes which have been donated by local businesses and even some that have a farther reach. Information about the event can be found at www.lift4lymph.com The event is open to all and I would love to have some lymphie folks out there.

Click the image to enlarge the flyer.

This has truly been a labor of love for me. I feel that planning this event has helped me come to terms with this condition.  I want to be as involved as I can be in supporting the community of people that suffer from this condition. I was inspired to do this after watching Deborah Carson, a fellow Crossfitter, make it to the Crossfit Games and place 13th. The games are like the Olympics for Crossfitters. She inspired me, so I want to pass it on.

Event website: www.lift4lymph.com
Donations/registration: http://lift4lymph.eventbrite.com/
Contact: lift4lymph@gmail.com or frankmamie@gmail.com

 

Submit your story to the Lymphie Life! Use the contact form here to share your personal story of living with lymphedema, and, with your permission, it’ll be posted on the website.

Help Fellow Lymphie Raise Money for Multiple Sclerosis

Jim Miller has suffered from lymphedema for the past forty-six years and has been a very encouraging and inspiring voice on this blog since it began over a year ago. He continues to infuse a certain spirit of optimism and confidence both on- and off-line by living an active lifestyle and participating in fundraisers for multiple sclerosis and childrens’ hospitals.

Most recently, Jim has committed to participating in the Colorado-Wyoming Chapter of Bike MS, where he will be riding 150 miles on June 30th and July 1st to raise money for multiple sclerosis. Proceeds from this event are used to provide programs and services to over 11,000 individuals in Colorado and Wyoming living with MS, as well as fund critical research projects in hope of finding a cure. On his personal page, Jim says,

I am participating in the MS150 bike ride again because many of us – me, you, your neighbors, friends at work, school, church and social life – have been surprised with medical challenges in our lives. Whether you face MS or have faced cancer, Parkinson’s or Lymphedema, a community that provides personal support as well as fund raising and research support makes a huge difference.

I’m asking you to help with a tax-deductible donation to the National MS Society in my name to fund research, advocate for change, and help people with MS and their families lead powerful lives. I believe in the work they do and want to be part of it.

Multiple Sclerosis affects people in the prime of their lives, between the ages of 20 and 50. Every hour someone is newly diagnosed with multiple sclerosis. More than 2.5 million people worldwide live with this unpredictable disease. Having multiple sclerosis means that you may suddenly have blurry vision, that your memory will fail you for no apparent reason, or that you may not always be able to walk, let alone ride a bike. The symptoms of MS are different for everyone – the only certainty is that it will affect yet another person every hour of every day.

Some of you also know that I will be riding with a condition known as lymphedema. You can learn more about it at www.lymphedemacommunity.com or the National Lymphedema Network (www.lymphnet.org). My objective is to help others I meet understand the challenges of lymphedema as well as MS, and that with either condition it takes much personal attention and dedication to keep focused on a positive future.

If you would like to support Jim in his bike ride as well as help raise money for MS, please consider making a donation in his name by clicking here. Thank you for your support!

Donate, donate, donate!

Hey, lymphies!

This is just a reminder to please donate to the Lymphatic Research Foundation by checking out The Lymphie Life’s “virtual walk” page here, or click here to make your donation. My goal is to raise $2,500 for LRF, and as of this posting, we are 10% of the way there!

Here is the link for the virtual walk: https://lymphatic.ejoinme.org/?tabid=279928&joinme=8601. Please pass the link along to your friends and family, post it on Facebook and Twitter, do whatever you can to get the word out and spread awareness and hope for those living with lymphedema and lymphatic diseases. Every little donation matters.

Thank you!!

The National Walk for Lymphedema and Lymphatic Diseases

The other day I received an email from the Lymphatic Research Foundation about the national walk they are hosting to raise awareness (and money!) for lymphedema and lymphatic diseases. It sounds like a wonderful opportunity, and although I can’t make it, I knew that some of you would be interested in participating.

I made a virtual fundraising page for the Lymphie Life, which you can see here. My goal is to raise $2,500 for LRF, and with your help, I think we can do it. Please, please, click the link and donate if you can! Even $5 can make a difference.

The following is text from the email with details about the national walk and how to get involved:

TEXAS – SATURDAY, SEPTEMBER 17, 2011

Mayor Arena at Loy Lake Park, Denison, TX

NEW YORK – SATURDAY, SEPTEMBER 24, 2011

Eisenhower Park, East Meadow, NY

MASSACHUSETTS – SUNDAY, OCTOBER 2, 2011

Ell Pond Gazebo, Melrose, MA

Register to walk today! www.walklrf.org

Or contact Colleen McGuire at: 855-435-7573 / walk@lymphaticresearch.org. Check out our Walk website at www.walklrf.org to create your individual or team pages.

Can’t be there in person? Do a virtual walk. Go to www.walklrf.org.

. . . or DONATE NOW to help conquer lymphedema and lymphatic disease!