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"

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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"

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American Headache and Migraine Association Launches

AHMA3-250I'm beyond excited today to announce the launch of the American Headache and Migraine Association (AHMA), a  patient-focused and patient-driven nonprofit organization!

The AHMA exists to EASE the burden of Migraine and other headache disorders through Education, Awareness, Support, and Engagement.

There are some programs in place, and others will be determined by AHMA members. AHMA will be holding an annual patient conference, the first one scheduled for November in Scottsdale, Arizona.

For more information, see the AHMA blog, Introducing the American Headache and Migraine Association.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2013
Last updated March 11, 2013.


2012 Holiday Gift for the Migraine and Headache Community

HolidayGiftPurpleGood morning to all of my extended Migraine and headache family! It doesn't seem possible that the holiday season has rolled around again, but here it is.

From everything I'm seeing and hearing, I can tell that many of you are having Migraine and headache problems, as am I. You know my very fondest wish is that we could all be instantly and miraculously cured. Since that's unlikely to happen any time soon, my next fondest wish is that each and every one of you find the right doctor to partner with and find successful treatment.

It's not something I've said much about, but my own Migraines have increased since other health issues forced me to cut back on some of my preventive medications last fall, and I'm back to chronic Migraines again. Last week, my Migraine specialist and I took the plunge, and he had the pleasure of adding 31 more little holes to my head in the form of Botox injections. We shall see how that does.

As has become my holiday tradition, I've made donations in honor of the Migraine and headache community as my holiday gift to you. This year, those donations went to The American Migraine Foundation and Clusterbusters.

HolidayGift2012

The American Migraine Foundation has just sent a letter about their plans for next year, and I'd like to share that letter with you:

In this holiday season, as migraine clinicians and researchers who have dedicated our careers to patients disabled with this disease, it's hard not to think of those who will suffer through the holidays and our obligation to contribute to alleviating this suffering. There is little doubt that among our holiday wishes as clinicians the top one is that this time next year we might be able to tell our patients that safer and dramatically more effective therapies are within reach, if not imminent.

While some interesting and encouraging advances were unveiled at this past year's Scientific Sessions in Los Angeles, the fact is that the triptans represent the only specific class of medication designed and approved for migraine in the last half-century. We appear to be, at best, several years away from having newer treatments. It is well known that federal funding for migraine research has been woefully inadequate, and industry cannot make up the slack.

We can do better . . . we must do better. We have the brain trust to move this field forward - what we lack is the funding to do so. So it falls to us in the voluntary health sector to make the right amount of noise in the right way to raise the national funding priority for migraine.

2013 promises to be an exciting year for AMF. We will launch a nationwide campaign to raise awareness and funding support for research. This campaign promises to mobilize the migraine community, public policymakers, well-known public figures, and American business to help us realize our goals. You will hear and see much more about this in the coming year and we hope you will be an active part of this unprecedented campaign. Our goals are to generate the highest possible national visibility for migraine and the need for more research funding -- and to inspire those who make funding decisions to give this disease the attention it deserves. If successful, we also hope to support the development of a national multicenter clinical registry and tissue bio-repository which has the promise of rapidly advance scientific and translational research. In addition, we will continue our quest to facilitate the development and success of academic headache centers around the United States. This will improve patient access to specialty care, facilitate the training of undergraduate and postgraduate medical trainees in the care of patients with disabling headache, and foster collaborative research efforts.

Because you are so integral to our success, we are asking for a donation to AMF. As we near the end of the year, your support can make the critical difference. You can do it by visiting our website at www.americanmigrainefoundation.org/Donation/default.aspx or by mailing us a check at the address below.

We thank you for your commitment to the field, our society, the foundation, and most importantly, your patients.

We wish you the very best throughout this holiday season and a healthy and prosperous 2013.

David W. Dodick, MD, FAHS
Chair, American Migraine Foundation

Elizabeth Loder, MD, MPH, FAHS
President, American Headache Society

http://amex.justgive.org/nonprofits/donate.jsp?ein=43-6058456

PS -- Did you know you can redeem your American Express Membership Rewards points for a donation? For every 1,000 points you redeem, we will receive $10.00. Select the Members Give banner at the link above.

Whatever holidays you may be observing, I hope they're joyful and that you have some pain-free time to enjoy them.

Live well,

PurpleRibbonTiny
 

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© Teri Robert, 2012
Last updated December 20, 2012.


In the Words of Those with Migraines and Headaches

SnowyBench2

This cold winter morning I've been scrolling through page after page of comments and stories from people who have Migraine disease and other headache disorders. These people are my heroes. They live with pain and other symptoms, the losses in their lives that Migraines and headaches have wrought, and the stigma that still pervades our society. 

Reading these comments and stories brought tears to my eyes, but they also called out to be shared so these people aren't just screaming into the wind.

If you're living with Migraine or another headache disorder, you may recognize yourself in the words of others, and those words validate that you're not alone. If you don't live with Migraines or headaches, what these dear people have said can serve as a windown into the lives of people who are.

Here are some of those comments and stories:

"If you only knew what an epidemic it really is! I have spent at least 10 out of the last 20 yrs. in bed. Know one is paying me disability, because I didn't hold down a job long enough in the first place. We desperately need your HELP!!"

"I have suffered for so many years with mgraines I often contemplated suicide because of the pain, it has left me finacially bankrupt and mentally devasting missing years of my childrens and grandchrildrens lives, thanks to hard work and the new techknowledgy and medicines my migraines are getting better but they still control my life I still miss out on so much living, there is still so much to do"

"In the first two years after my diagnosis in 2007 I had over 200 days of migraines. First, I lost my job, then my husband, my home, 85% of my hair, and friends that I don't have the energy to keep up with. I have tried almost every treatment protocal in the past 4 years with mediocre success. I am 45 and taking an Alzheimers medication as a preventative treatment. Treximet which was recently released by the FDA has been a lifesaver. We need more solutions like it. There has to be attention to understanding and curing this dehabilitating disease."

"I have chronic migraines, ones which impact me severely and daily. I have an Engineering degree but can only hold down a basic computer repair job because it's difficult to think when you're in so much pain. I've had to cancel every one of my hobbies and activities, either due to the pain itself or simply from skipping so many days due to this illness. It's easy to dismiss these as "just another headache" if you've never experienced them...I foolishly once did this as well...but please understand that when any light and sound causes you immense pain, you effectively cannot do a single thing. You lose friends, you miss out on activities and special events, and your life essentially just stops as you can do nothing else."

"Nobody knows what a living hell constant migraines can be; you just want to give up your will to live b/c life is not worth living w/this pain."

"This biological, neurological disease that I have suffered for over 50 years has taken precious time from me, and has cost me my job of 18 years...I have had open heart surgery with quintuple bypass, and a bifemeral artery bypass...I have no health insureance so my migraine drugs costs 40 dollars per pill....I could go on and on...."

"I live in bed due to neverending headaches and take multiple narcotics to keep the pain to a dull roar. I have no life, no fun. I leave the house to go to the doctor, rarely for other reasons. There needs to be more research into why people end up like this. This is no way to live."

If there's someone in your life who has Migraines or headaches, I hope this has given you some insight into their lives. They need your help and understanding. For those of you who live this yourselves, let's keep each other in our thoughts today and hope everyone is having a day that's as pain-free as possible.

The problems of living with Migraines and headaches seem monumental, and they are. But, decidated researchers are trying to improve the available treatments and quality of life for everyone affected. To be successful, these researchers need more funding, and to get more funding, we need the American people in general and Congress specifically to better understand Migraine and other headache disorders and what they do to the lives of American citizens. To that end, the Alliance for Headache Disorders Advocacy (AHDA) is currently asking people to sign a petition, one that AHDA advocates will personally deliver to members of Congress on March 27. It takes less than a minute to sign it. You simply follow the link and enter your first name, last name, email address, and ZIP code.

If you've signed this petition, thank you from the bottom of my heart! If you haven't signed it, please take just a moment to do so. Please use your real, full name or Congress will disregard your signature. Your name will NOT be revealed to anyone else. Please use a different email adddress for each signer. Also, if you would, please, share the link with your friends, post it to Facebook and Twitter? We all appreciate any help you can offer.

SIGN THE PETITION

Live well,


 

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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, 2012
Last updated January 19, 2012.


Migraine Research Foundation's 2011 Grants Announced

MRFLog
The Migraine Research Foundation (MRF), a nonprofit devoted to funding ground-breaking research into the causes and better treatments of Migraine disease, has announced their 2011 grant awards. The four grants were selected from 34 proposals submitted from around the world.

This year’s grantees will explore innovative inquiries in the areas of:
  • chronic Migraine treatment,
  • genetic sequencing, and
  • basic science.
Cathy Glaser, President of the MRF stated,
“We are thrilled with the caliber of these projects. They all represent innovative approaches to unraveling the mysteries of migraine in different ways. MRF has a tradition of awarding grants to some of the most promising investigators – and we know they’re going to make a difference in the lives of millions of migraine sufferers.”
The MRF grant recipients and their projects are:
 
AntalPaulus
Andrea Antal, PhD and
Walter Paulus, MD.
Georg-August University, Göttingen, Germany
Transcranial Alternating Current Stimulation for the Acute Treatment of Migraine.
 

Cutrer
F. Michael Cutrer, MD
.
Mayo Clinic, Rochester, MN
Whole Exome Sequencing as a Strategy for Gene Discovery in a Large Well Characterized Family with Migraine.
 
 

Gold
Michael S. Gold, PhD
.
University of Pittsburgh, PA
Calcium Activated Chloride Channels as a Novel Target for the Treatment of Migraine.
 
 
 
The MRF has also awarded a grant to award-winning filmmakers Jacki Ochs and Susanna Styron of the Human Arts Association in New York to help fund their feature-length documentary, The Migraine Project. The Migraine Project is a feature length documentary designed to increase awareness and understanding of migraine for a world-wide audience.

Dr. Joel Saper, founder of the Michigan Headache & Neurological Institute, Ann Arbor, MI, and Chair of MRF’s Medical Advisory Board, commented,

“This year’s recipients continue to demonstrate the highly innovative thinking MRF encourages. The medical community is grateful to the Foundation and the investigators it supports.”

For more information about the MRF or to make a donation visit their web site.

Live well,


 

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© Teri Robert, 2012
Last updated January 17, 2012.


Living with Migraines - Thoughts and Music on a Sunday

ThoughtsSundaySunday is often a contemplative day for me when I think about last week, plan next week, and think about all kinds of things, including my Migraine "family."

This week is no exception. Well, maybe it is in a way. It's been a hectic couple of weeks with wrapping up 2011 and starting into 2012, and several things have kept everyone who lives with Migraine and other headache disorders in both my thoughts and my actions.

This morning, I received an email that brought tears to my eyes and a spectrum of emotions along with the tears. WEGOHealth is running a Health Activist Awards campaign, and nominations for 2011 awards closed the end of December. The email I received this morning notified me that I've been nominated as a "Health Activist Hero" It included a copy of what the person wrote when they nominated me. Wow. They didn't give me the name of the person who nominated me. I could make a few guesses, but I really don't know who it was. Every day, I count myself fortunate to do the work I do because I'm able to help people with Migraines and headaches, people I can relate to because of how Migraines have made a mess of my life at times. This email left me both humbled and elated. It confirmed for me that we can make a difference, one person at a time. Wow. To whomever nominated me, thank you.

On Facebook, Nancy Bonk, Ellen Schankenberg, and I created a new group, Migraine Info & Support for the Proactive Migraineur. We made it a "closed" group so people have to ask to join. That lets us keep the spammers out or kick them out if they fool us into letting them in. It also lets us make it a safe place for Migraineurs to come for support in a place where they can talk with people who understand and will support them, then help them find proactive solutions to their problems. It's doing really well.

AHDACapitolThe Alliance for Headache Disorders Advocacy (AHDA) continues to ask everyone to sign our online petition urging Congress to hold the first ever hearings about Migraines and other headache disorders. We need 20,000 signatures before March 27, when AHDA advocates will personally present the petition to our Senators and members of the House during Headache on the Hill.

Here's why we're working on this petition - One of our biggest problems is lack of good treatments, and a big part of that problem is lack of adequate research funding. That, in turn, is largely a result of Congress and the public not understanding the impact of Migraine and other headache disorders. The shorter term results would be better Congressional and public understanding of all of the disorders and their impact. The longer results would be that understanding leading to more research funding, better treatments, more well-trained health care professionals, improved health for Migraine and headache patients, and a decrease in the stigma surrounding the disorders.

If you haven't signed the petition yet, please sign it? It honestly will take you less than one minute, and you'll be helping millions of people. Sign the Petition.

Now, just for fun, I want to share something with you. Someone sent me a YouTube link on Twitter this morning. I enjoyed it so much I thought I'd pass it along. Enjoy!

Live well,


 

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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, 2012
Last updated January 8, 2012.


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


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 19, 2011