Walk to End Myasthenia Gravis!

If you've spent much time online today, you've probably seen things tagged #GivingTuesday or #UNSelfie. After the retail rush since Black Friday, it's probably a relief to have time to check your social media!

#GivingTuesday™ is a campaign to create a national day of giving at the start of the annual holiday season. It celebrates and encourages charitable activities that support nonprofit organizations. 

And #UNSelfie? Well. That's in reference to the "Selfie" (Oxford Dictionary's Word of the Year if you hadn't heard...) or a self portrait, usually posted online.

We're hoping that the portrait you paint of your self online is more like an #unselfie, and that you make a donation of any size to the MG Walk Campaign. Even by sharing this post, you're helping us get the word out about your interest in finding a cure and support those who battle myasthenia gravis.

Our fundraising goal for 2013 is $750,000 and we are getting closer every day!

Please note - The MG Walk office is sharing this news as it may interest our followers. We can't comment or provide more information about the information contained in the article.

Even though it's a little bit sad that Summer is over, it was so good to have that first sip of Pumpkin Spiced Coffee this weekend!

But this fall will be so much better than pretty leaves and seasonal flavored coffees, because soon, we'll be together participating in an MG Walk near you!

Following up on the successful spring MG Walk season, this fall we'll be back on the path to wellness, raising awareness and funds to research a cure for myasthenia gravis!

Check out our website for a list of upcoming walks, or register to start a "Virtual Walk" anywhere. Of course, if you have questions, give us a call or email info[at]mgwalk[dot]org!

Frisco resident Rachel Forghani has a lot to be thankful for!

Perhaps you saw this in an email from the Myasthenia Gravis Foundation of America (MGFA), but we wanted to let everyone know about the long-awaited launch of the Myasthenia Gravis Patient Registry.

The Myasthenia Gravis (MG) Patient Registry is an active database of persons with MG, developed for the purposes of research, treatment, advocacy and public awareness.  The Registry is NOW LIVE and open to INDIVIDUALS WITH MG.  To enroll, please follow these steps:

Click on the following link to go to the “Participant Sign Up” page:  https://mgregistry.soph.uab.edu/MGRegistry/SignUp.aspx

Read and agree to the Terms and Conditions of participation and complete all of the fields under Register. (For future reference, record the username, password, and email address you use to register, as well as your security questions and answers.)

Click “Sign me up”.

Complete and submit the enrollment survey. (This step may take some time, as you gather information, but you may enter and save your work and return to it over time.)

After you submit the enrollment survey you will be fully enrolled in the MG Patient Registry and will begin receiving survey updates two times a year. 

If you have any questions or need assistance as you go forward, please do not hesitate to contact us at the email or phone number below.  We look forward to partnering with you in this worthwhile endeavor!

MG Patient Registry Coordinating Center

Email:  [email protected]

Phone:  205-975-8633 or Toll-free 855-337-8633

This is a podcast that features information for patients of MG who come from all walks of life from the Myasthenia Gravis Foundation of America (MGFA). Listen online or on the road, or share with a friend or family member who doesn't understand what you're going through. 

This series will help you, and is just one reason that we're walking together. 

WNYT Albany has done a great piece to share for Myasthenia Gravis Awareness Month!

It's full of good information about the disease, it's symptoms and treatment options, so this is perfect to pass this on to friends and family.

Here's an inspiring interview of an MG Patient who is celebrating MG Awareness month this June.

In case you didn't know, the MG Walks are an important awareness and fundraising campaign for the Myasthenia Gravis Foundation of America, mentioned in this article. 

We're hoping that MG Awareness Month is a great way for patients and their families to break the ice and talk about the disease. At the MG Walks, we find people have formed teams with friends and family who didn't know about MG at all, and the whole morning is very therapeutic. 

In a press release, MasterChef Season One winner and cookbook author Whitney Miller announced she is partnering in her Myasthenia Gravis (MG) fundrai

“Please help me to spread awareness of this disease, MG, this month,” she requested. “There is no known cure at this time, but we can make a difference in the lives of those who have it.” 

Dana and Pax from the MG Walk Office - Kicking off the Tristate Walk on June 1st. 

It was warm, but we had a BLAST! Plus we got to see Governor Cuomo's Proclamation declaring that June is Myasthenia Gravis Awareness Month, delivered by Freddy Ferrer. (NYC Mayoral Candidate, Bronx President, MTA Chairman and MG Patient!)

A Cramlington man will take on an epic walk along a section of the Great Wall of China to raise awareness of a life-threatening disease.

This guy is in the UK, and he's traveling to China to raise awareness. 

Kudos, Philip Knowles! 

Did you know you could walk in the US at one of our MG Walks? Check out the list here. 

Whitney Miller and Tommy Santora on WGNO-ABC talking about the MG Walk and Pancakes. 

Don't miss Whitney's book signing at the Barnes and Noble in Metairie after the walk on saturday!

This PSA is airing in New Orleans! It's so empowering to see awareness of Myasthenia Gravis being spread. 

This is also a great example of what sponsorships can do. It doesn't hurt to ask people you know to help with a walk you're participating in.

New Orleans CityBusiness Magazine has named its 2013 Class of “Health Care Heroes”. This honor is important for New Orleans, but this year, there’s a special importance for those affected by myasthenia gravis.

Tommy Santora (pictured here with wife Whitney at the 2012 MG Walk) is a New Orleans businessman, MG patient and MG Walk Team Captain, receiving the distinction of “Health Care Hero” in the Volunteer category. 

In a brief statement, Tommy explains his commitment to helping the MG Community:

"Two years ago, I started the New Orleans Myasthenia Gravis Support Group. I have had MG for more than 20 years, since I was diagnosed at the age of 12. Starting this support group and helping MG patients has been one of the best decisions and one of the more fulfilling opportunities in my life. In fact, I just recently joined the national MGFA foundation board to contribute even more."

The best news, for Tommy personally and for the Support Group he started, is an article that will be published in May, bringing awareness throughout the local medical community. This Special Section "also features other Health Care professionals and topics, so it will be widely read by the local medical community across the state of Louisiana, and this is big for MG awareness down here.”

With the MG Walk approaching on April 6th at Lafreniere Park in Metairie, Team Santora is nearing it’s $35,000 goal. “We are continuing to push forward the news of our walk via news media, social media, word of mouth among family and friends, and distributing the brochures to area pharmacies, hospitals, fitness centers and other public places.” 

Tommy keeps the spotlight off of himself and focused sharply on his cause and the efforts of his team: "I am very proud to be involved with the MGFA and the MG Walk fundraising efforts. We have a very special group of people down here, and this group of 100-plus members has truly come together to rally around each other, help each other and raise awareness about our rare disease in the New Orleans community."

You don’t have to be named a hero to make a difference; every dollar raised helps the MGFA support those who live with the disease. Every person you tell about the walk is one more person that knows about myasthenia gravis, and the need for a cure.

Join us for a quick Webinar to get tips on fundraising, walk day, and a Q & A with the walk office! Date and time coming soon!

Get info or help by calling 855-MGWalks (855-649-2557) Today! 

Need some fundraising tips? Click Here

Looking for some great tools? Click Here