Running, Walking, Tweeting for Migraine and Headache Research on 10/8

R4R-M4R-TwitterThis coming Saturday, October 8, is a big day for Migraine and Headache awareness and research funding. There are four important events this weekend:

  • Runnin' for Research run/walk events in West Virginia, Kentucky, and Missouri; and
  • A Miles for Migraine run/walk event in Pennsylvania.

You can find more details on these events in A Day to Fund Migraine and Headache Research - Join Us!

If you have some time on Saturday, there's an easy way everyone can help us raise awareness with these events - Tweeting and reTweeting! People at these events are going to be Tweeting, some with photos of the events, and other people reTweeting is a great way to raise awareness for Migraine and other Headache disorders as well as the two organizations.

Twitter IDs:

Hashtags:

The specific hashtags for the events are:

  • Runnin' for Research - #R4R2016
  • Miles for Migraine - #M4M2016

Sine other appropriate hashtags include:

  • #Migraine
  • #Headache
  • #ClusterHeadaches
  • #NDPH
  • #ChronicMigraine
  • #HemiplegicMigraine
  • #MHAY (Migraine and Headache Awareness Year - Encourages raising awareness all year.)

Have a great weekend! I'll see you on Twitter. 😘

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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A Day to Fund Migraine and Headache Research - Join Us!

R4R-M4ROn Saturday, October 8, we have several opportunities to help raise funds for Migraine and Headache research:

Runnin' for Research will be holding 5-K runs and 1-mile walk walks in three locations:

  1. Morgantown, West Virginia;
  2. Parkville, Missouri (just outside Kansas City); and
  3. Jeffersontown, Kentucky (just outside Louisville).

There is also a virtual runner option for all three of the Runnin' for Research events for those who can't be there in person to participate. To register to walk or run, in person or virtually, visit the Runnin' for Research upcoming races page.

Also on October 8, Miles for Migraine has a 5-K run, 10-K run, and 2-mile walk in Philadelphia. To register for the Miles for Migraine event, visit their registration page.

About Runnin' for Research and Miles for Migraine:

Runnin' for Research works with patients, doctors, and institutions to hold run and walk events to raise funding for research for Migraine, Cluster Headaches, and other headache disorders and to raise awareness of these disorders. Events can be held in cities and towns of varying sizes.

Miles for Migraine holds events in large cities that have teaching hospitals with fellowships in "headache medicine." Funds raised by these races are used to support research and the education of headache and Migraine experts in these cities.

Please Join Us:

For more information, or to register, visit:

Runnin' for Research

Miles for Migraine

 

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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Walk or Run for Migraine and Headache Research - In Person or Virtually

R4R-logo-250On Saturday, October 8, three Runnin' for Research runs/walks to raise funding for Migraine and Headache research will occur in:

  • Jeffersontown, Kentucky (outside Louisville);
  • Morgantown, West Virginia, and
  • Parkville, Missouri (outside Kansas City).

In each location, there will be a 5-K run and a 1-mile walk. For those who can't be present or who are physically unable to participate, there's a "virtual runner" option to support the events.

Registration for these events is kept to an affordable $20 fee. National and local sponsors have provided financial support that offsets an race expenses not covered by registration fees and adds to the "kitty" for research donations. The directors of these three events are volunteers, and they've worked diligently to organize and run fun, high quality events at minimum cost.

This is the third year for Runnin' for Research events. In 2015, Runnin' for Research donated $6,313 to the American Migraine Foundation from just one race in Morgantown. In 2016, the Louisville area race was added, and $17,434 was donated. With the addition of the Kansas City area race this year, it's anticipated that the donation will grow significantly.

These events are coming up fast! For more information on these three events, or to register, please visit the upcoming races page on the Runnin' for Research site.

Live well,

PurpleRibbonTiny Teri1

 

 because a migraine is NOT "just a headache"

Visit MigraineDisease.com

 

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Migraine Advocacy, Leadership, and Nonsense

MimeSteepledFingersSome of you who follow me on Twitter (@TRobert) have been asking what's going on with a certain person who has been attacking my integrity as a Migraine patient educator and advocate. I'm not going to give him the attention he seeks by mentioning his name. I'll just refer to him by an appropriate movie reference, "he-who-must-not-be-named."

His motivation is a mystery to me, partly because he contradicts himself often, and partly because he often just makes no sense. He has said that I'm biased because I take money from "big pharma," which isn't accurate. I explained that a while back for you, my readers, not for him, in Migraines, Advocacy, and Big Pharma. Now, he's calling that blog entry "inaccurate" because I said I'm paid for blogging for Migraine.com, and that they provide the site to users at no charge by selling advertising space on the site. Now he's yammering that there are no "big pharma" ads on the site. Maybe you can see my confusion here? First he gripes about there being advertising; then he's giving me 24 hours to prove there are ads on the site or his company will "issue a press" on me. As it turns out, the reason he can't see the ads is that they're only visible to people viewing the site from the U.S. Regardless, there's simply no sense in the aggressiveness or attacks, especially when I've been quite open and transparent about all of my relationships with any company.

That's just a bit of what's been going on with being maligned by "he-who-must-not-be-named." If he lived in the United States, I could consider suing him for libel, defamation, and other things, but he doesn't live in the U.S. I suspect that's part of why he feels he can say the things he does with impunity. Of course, he has tweeted that he enjoys arguing. Go figure!

Twitter will do nothing about him and his Tweets. It's their policy that "differences" between users be sorted out between them. Since he hasn't physically threatened me, they don't even consider what he's doing to be harassment.

In any case, this makes me think of something my college president said, "You know you're being an effective leader when half the people are following you, and half the people are chasing you." Looking at it that way, maybe it's a badge of honor to be attacked by this person. I'm in good company at least. He also claims that some of the best and brightest doctors and researchers in the Migraine field are wrong in their thinking about Migraine disease, claiming that their research is flawed and biased. Yeah, right.

Usually, I'm happy to discuss different theories with people, entertaining the thought that their theories can have merit even though they fly in the face of the current conventional wisdom. In the case of "he-who-must-not-be-named," his approach has resulted in my not wanting to hear anything he says about the theories he supports because he's so certain that only his theories are correct and the fact that he attacks and vilifies anyone who disagrees. 

In the end, he's nothing more than a bully who seems to need to attack other people to prove his worth. I've been responding to him because I want patients to have access to good information and not fall for his rhetoric. I'm through with that. You are more intelligent than to fall for it. In the 13 years I've been working to bring you information and offer you support, I've never misled you, and I never will.  Responding to "he-who-must-not-be-named" accomplishes nothing, reinforces his bad behavior, and - most importantly - takes time that I could spend writing for or supporting people with Migraine and other headache disorders. He'll have to be content with talking to himself because I'm not playing his game any longer.

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2013
Last updated February 12, 2013.

 


A Holiday Gift for My Migraine and Headache Family

GoldPackageWith all my holiday shopping for family completed, my thoughts turned to a gift for my extended Migraine and headache family.

With so many of you scattered across the United States and in other countries, sending each of you a personal gift just isn't possible, but I wanted to do something beyond words to show you that I'm thinking of you during this holiday season.

Finally, I decided to do what I did last year, make a donation to a nonprofit organization, a donation that would do something for all of us. Well, that's easier said than done because there are several organizations working hard to improve conditions for all of us living with Migraine disease and other headache disorders.

With the decision made that a donation was the way to go, the next decision was... Which organization. That one was just too tough for me. So, I made donations to (in alphabetical order):

 

AHDALogo200The Alliance for Headache Disorders Advocacy (AHDA)


AMF200The American Migraine Foundation


ClusterBusters200Clusterbusters


MFRLogo200pxThe Migraine Research Foundation


NHF200The National Headache Foundation


OUCH200The Organization for Understanding Cluster Headaches (OUCH)

If you still have holiday gifts to select, please consider making a donation in someone's name as a gift to them. I can tell you it's a gift I'd appreciate, and I have no doubt that many people with Migraine and other headache disorders would appreciate this type of gift too.

My most profound holiday wish for each and every one of you is that the new year bring you better treatments, more understanding from those around you, good health, and improved quality of life. I can wish that all I want, but as Carl Sandburg said, "Wishes won't wash dishes." So, I've made these donations as my holiday gift to you, hoping that their work helps that wish come true.

Live well,


 

Puz-only-btn


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© Teri Robert, 2011
Last updated December 19, 2011


Satisfied with Available Migraine Treatment?

Are you satisfied with the Migraine treatments that are currently available? Do you think doctors; the general public; your family, friends, and employers understand Migraine? Have the myths and misconceptions about Migraine and the stigma that comes with having Migraine disease gone away?

No?

MimeSignPetition
For more information about the AHDA petition to Congress, see Better Migraine Treatment, More Awareness - Take Just 2 Minutes.

If we don't speak up for ourselves, we can't expect others to stand up for us. Don't sit back and think that other people will sign the petition so you don't need to. This is not JUST another online petition. It is set up through a company specializing in delivering messages to Congress AND advocates from the Alliance for Headache Disorders Advocacy will PERSONALLY be delivering the petition to members of Congress during Headache on the Hill in March, 2012. If Migraineurs, their families, their friends, and others who are concerned don't sign this petiton AHDA advocates cannot succeed. Honestly, if you don't sign this petition and help with efforts to improve the state of Migraine research and treatment, you forfeit the right to complain about it.

Please sign the petition!

Live well,


 

Puz-only-btn


Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated December 13, 2011


Migraine Advocacy with Endless Funding or in Reality?

Advocacy$Sometimes, I daydream about what I'd do if I won the lottery and had the money to do anything I wanted to for Migraine advocacy.

Would I donate to organizations that fund research, education, and advocacy efforts. I could, but would that be the most effective thing to do? What would those organizations do when that money ran out? Although there's been a great deal of progress, scientists still aren't completely certain about the cause of Migraine diseae or its pathophysiology. Until those questions are answered, the search for effective treatments, let alone a cure, is handicapped, so funding is going to be needed for many years to come.

If I had the funds to do it, rather than donating money to these organizations to go directly into research, patient and physician education, and support, I'd set up large endowments for organizations including the Alliance for Headache Disorders Advocacy, American Headache Society, American Migraine Foundation, and the Migraine Research Foundation. With large endowments, the yearly income from the endowment would facilitate their work, and that income would be there year after year.

BUT, that's daydreaming. Reality is far different, so we have to have more realistic expectations and set more realistic goals. Currently, the Alliance for Headache Disorders Advocacy is trying to get a Congressional hearing on Migraine and other headache disorders. You may remember the Congressional hearing on Parkinson's where Michael J. Fox testified. That hearing accomplished a great deal for people with Parkinson's. A hearing on Migraine and headahce disorders could:

  • advance public understandings of the disorders, reducing the myths and misconceptions that abound today.
  • aid in getting policy makers to understand that NIH research funding needs to more closely correlate with disease burden, not go to those who make the most noise.
  • aid in reducing the stigma associated with Migraine and other headache disorders.

It's fun to daydream, but we don't live in that world. We live in the real world. So, it's time to get to work on these more realistic goals.

HAWMCBannerThis post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Live well,


 

Puz-only-btn


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© Teri Robert, 2011
Last updated November 6, 2011


Urgent: Take Action Now to Protect Migraine Research

Capitol As you may know, the Alliance for Headache Disorders Advocacy has been working to get NIH funding for Migraine and other headache disorders increased. Today, we find that not only is the work we've been doing in danger, but all NIH funding is in question.

We sent out an action alert today asking people to take a few minutes to email their members of the House about this issue. Here's the email we sent:

Today the House of Representatives is debating an immediate and unprecedented $1.6 billion cut to the budget of the National Institutes of Health. These proposed reductions are a serious threat to our nation's health and the prospects for improved therapies for migraine and other disabling headache disorders.
 
The cuts are also harmful to our economic competitiveness. More than 83% of NIH funding is spent in communities across the nation, creating jobs at more than 3,000 universities, medical schools, teaching hospitals, and other research institutions in every state.

Contact your member of the US House of Representatives TODAY and tell her/him that funding for health research is vital to curing diseases, generating jobs now and in the future, and securing the economic well-being of America.

Oppose the cuts to NIH now!

Thank you.
 
Sincerely,
Robert E. Shapiro, MD, PhD
AHDA President

We've prewritten a letter to go to members of the House. There's a space left to add your own comments if you wish. Once you've entered your name and address, the system we use automatically finds your Representative and sends the email for you. It's so simple that it can be done in five minutes or less, literally.

This alert is now expired. Thank you for your interest.

Live well,


 

Puz-only-btn


Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2011
Last updated February 18, 2011