NIH joins together five brain banks

The NIH announced the formation of a new brain and tissue repository network, NeuroBioBank, in order to create better access to post-mortem samples for those researchers studying brain disorders. Brain banks accept brain and tissue donations from people affect by brain diseases and from non-affected individuals, searching for changes that may offer insight into the cause of disorders such as essential tremor, depression, multiple sclerosis and autism.

Until now, brain banks were funded in a piece-meal sort of fashion; individual researchers requested funds for a specific disease or their specific bank. With this project, the NIH is looking to consolidate its funding efforts into a larger, more effective, standardized repository.

In September of 2013, contracts totaling $4.7 million were awarded to five brain bank repositories:  Mt. Sinai School of Medicine, New York City; Harvard University in Cambridge, MA; University of Miami; Sepulveda Research Corp., Los Angeles; and the University of Pittsburgh.  These banks have already begun developing a web-based sharing system that will allow the whole of the neuroscience community access to brain tissue samples and data, with a simple click of a mouse.

“Instead of having to seek out brain tissue needed for study from scattered repositories,   researchers will have one-stop access to the specimens they need,” explained Thomas Insel, MD, director of NIH’s National Institute of Mental Health.

Other brain banks, such as those funded by the IETF for the study of essential tremor, may become eligible to become contract sites of the NeuroBioBank in the future. In the meantime, the five current NeuroBioBank sites will soon be uploading their specimen inventories and clinical data (early 2014) so that researchers from around the globe can identify available specimens and further our understanding of the inner workings of brain and brain disorders.

For more information about the participating brain banks visit www.neurobiobank.nih.gov. You can also learn more about IETF funded brain banks in the IETF Funded Research section of our website.

Where has my button been? Join in the fun!

ZoomButtonwithTitleThumbWe’re always looking for fresh ways to bring essential tremor into greater public consciousness. In this high-tech age, we have all sorts of digital solutions, but for our latest effort, we’ve gone decidedly old-school: a simple one-inch button that you pin on your lapel (or wherever you like!). The button features the same Archimedes spiral that is used by movement disorders neurologists to help diagnose essential tremor and that is also seen in the IETF logo.

Based on anecdotal evidence from those of us at the IETF headquarters who’ve worn them out and about, the handsome, bright-green spiral has proven to be a fine conversation starter. During March, for National Essential Tremor Awareness Month, we distributed more than 2,500 of these must-have accessories. They are free and we will be using them all year long to raise awareness about ET.

Join in the fun on our Facebook page at https://www.facebook.com/InternationalEssentialTremorFoundation where people will be sporting their spiral buttons and engaging in Where has my button been? activities. Several of my ET friends in Houston and I posted the first picture on Facebook to commemorate my button’s inaugural visit to Houston for the ET Education Seminar.

You may order your button through our webstore at http://www.essentialtremor.org/SiteResources/Modules/webstore/scripts/default.asp or by calling our toll-free number 888.387.3667. Order a few extra to share with friends, and expand the circle of button-wearers! Let’s see how many different and exotic places these stylish buttons (with their owners!) travel. So please, tell us–and show us–where has your button been?

If asked about the button, you can sound very worldly and educated:

▪ Tell them that the spiral is named after the Greek mathematician Archimedes (287-212 BC);

▪ Tell them that asking a patient to draw an Archimedes spiral is one of the indicators physicians have for diagnosing essential tremor;

▪ Tell them that for millions of people worldwide, the spiral represents hope for a better future;

▪ Ask them to join you in supporting efforts to raise awareness and funds to find better treatments and a cure.

 

 

A Day of Giving

Giving Tuesday

?Deeds of giving are the very foundations of the world.? -Jewish saying derived from the Mishna, Pirkei Avot 1:2

In the U.S. we have our traditions. We celebrate Thanksgiving on the fourth Thursday each year by spending time to feast with friends and family and give thanks for all of our blessings. On Friday, after we recover from our carb-coma, it is estimated that 247 million thankful Americans hit their favorite stores and shopping malls, spending around $59.1 billion (that’s right ? with a ?b?). Then Cyber Monday hits and as people head back to their offices, they load up on online deals to the sum of another $730 million.

This year there was a new day holiday marketers wanted to see join the season’s frenzy–a new national movement to dedicate one day strictly to giving back. GivingTuesday? is a campaign to add a new date to the national calendar; a date selected to show support for those non-profit organizations who strive each and every day of the year to fulfill their mission and make the world a better place.

This year was the first ever GivingTuesday?, and the IETF was happy to take part. With just an email and a few posts on Facebook, our generous friends donated $2,200 to the IETF mission! Not only that, those who were unable to give financially were encouraged to give back to their community by distributing essential tremor information to hospitals, clinics, doctor’s offices, schools, civic and senior centers, etc. to help raise awareness.

We thought if we raised $50 we would consider it a successful day. But after our first post, donations of every size and from all over the world began coming in. We quickly raised our goal to $500, then $1,000. But we never dreamed we would raise $2,000 in one day. We have an amazing group of supporters who came forward to give back. We are both impressed and humbled by their generosity.

Thank you to everyone who made this very first GivingTuesday? a great success! If you missed it, you can still donate. Here’s a link: www.essentialtremor.org/givingtuesday. Show your support for your foundation. Make us raise the bar even higher! Any day can be a giving day. Can we hit $3,000? I guess we’ll find out ?