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1. Does your State Legislature Support Libraries?

Has it crossed your radar yet that there's been a big shift in how laws are getting made?  Last year state legislatures around the country passed 45,564 bills, compared with just 352 passed in Congress.  That works out to an average of 911 bills per state.  This change in the way laws are getting made means that we need to change the way we advocate for teens and libraries.  Spring is the time of year when many state legislatures are in session.  What can you (or your teen patrons) do to call their attention to the importance of libraries?  YALSA has the answer!  We have everything you need to reach out to your state legislators and ask them if they will sponsor a resolution in support of libraries.  A resolution is not legislation or a bill--just a feel good message about libraries.  Both Congress and state legislatures pass these types of warm fuzzies all of the time in an effort to make nice with the voters.  YALSA has a few sample documents compiled into one file that you can adapt and use, including a sample resolution, emails and a press release.  Access the MS Word file today for an easy way to raise awareness about libraries with the elected officials in your state!
If you want to learn more about what's going on at your state legislature, check out The 50 State Project, and find out what's happening with library related-legislation and/or get in touch with your state legislators by visiting http://cqrcengage.com/ala/chapters. And don't forget that National Library Legislative Day is May 5th!  If you can't make it to Washington DC, ALA has several ways that you can participate virtually.  Lastly, there are a bunch of advocacy resources on the YALSA web site at ala.org/yalsa/advocacy that you can use year round to advocate for teens and libraries.

-Beth Yoke

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2. Ceremonial Bill Signing for the TJ Atchison SCI Research Program

From left: Senator Keahey, TJ, and Governor Bentley
Yesterday Governor Bentley officially signed TJ's bill which approved funding for the TJ Atchison Spinal Cord Injury Research Program. Sponsored by Senator Marc Keahey (D-Grove Hill), this initiative was passed by the Alabama State Legislature on May 16th which allocated $400,000 in research funding to the University of Alabama Birmingham School of Medicine.

Details of the bill and the work that we did to accomplish this goal are available here.

A recap of the ceremony

Representative Elaine Beech from Washington County, friends, family, supporters of TJ, along with Dr. Candace Floyd and other UAB staff  had the opportunity to meet with Governor Bentley and the legislative bill author, Senator Marc Keahey, for a ceremonial bill signing at the Capitol. Those of us who were lucky enough to attend the ceremony were pleased to share this special day with TJ and his family.

Governor Bentley having a private chat with TJ 
We knew that Governor Bentley was extremely busy and had many things on his agenda (such as visiting families of south Alabama who were impacted by storm, Isaac, earlier in the week), and so we expected that the ceremony would be quick. However, when the Governor came to meet us in the beautiful Old Office Chamber Room of the Capitol, he took the time to speak with TJ about his goals for being a patient advocate, then asked if we had any questions for him.

My daughter Catie, Governor Bentley, and TJ's sister Alyssa
Governor Bentley was such a gracious host. He held the hands of our little ones and encouraged them to be great students, friends, and to work hard in their schools and communities.

From left: Senator Keahey, Tucker McDonald, Anita & Carey McDonald, Governor Bentley, Representative Elaine Beech; Bottom: Alyssa and TJ
When there were no more picture requests or questions left to ask, the Governor seated himself at a desk in the center of the room and we gathered around him for the bill signing ceremony. After we had our group photo taken, the Governor handed out pens with his name on them to TJ and the children gathered around his chair.

In all, Governor Bentley spent about 25 minutes with our group. It was obvious that he enjoyed chatting with us and with TJ, as his staff finally had to inform him that it was time for the visit to end. Indeed, we were honored by the whole experience!

After tons of persistence and determination, TJ and I were thrilled to say, "WE DID IT!" 
Celebratory luncheon
Program Administrator for the TJ Atchison Spinal Cord Injury Research Program,
Dr. Candace Floyd (standing), welcomed our group to the special luncheon held at
Central Restaurant in Montgomery.
 
Of course our hearts were filled with such joy and happiness for what had been triumphantly accomplished, but our group sorely missed the company of our dear friend and ally Roman Reed .

November 11, 2011, the beginning of "TJ's Law"
 From left: Me, Bonnie Blackwell, Roman Reed, and TJ
Because of Roman's commitment to pass AB 1657 ( This bill will raise funds to sustain the Roman Reed SCI Research Fund at UC Irvine’s Reeve-Irvine Center) in his home state of California, Roman was unable to make the trip to Bama for Governor Bentley's bill signing.

TJ's program at UAB would never have been possible had it not been for Roman's instrumental roll in the formation and passing of Senator Keahey's legislation. So on behalf of our TEAM, I would like to say thank you to Roman for everything he has done to encourage and help TJ in his mission for paralysis cure.

"From Alabama to California, TJ and I fight together so that one day soon, all who suffer from a spinal cord injury / paralysis can stand with you!" ~ Roman Reed

Please stay tuned to Head in the Clouds as more pictures from this special day will be posted soon. Take care and have a wonderful Labor Day weekend!

Much love, Tory




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3. Rally Time for Roman!

It's rally time, friends! 
Roman Reed has been instrumental in the formation of SB338 in Alabama – the T.J. Atchison SPINAL CORD INJURY RESEARCH ACT. “TJ’s Law” was filed into legislation by Senator Marc Keahey on February 16, 2012 with funding to be allocated via the University of Alabama at Birmingham.

The Roman Reed Spinal Cord Injury Research Act has made a significant impact on SCI research in America, and across the world. As a witness to this devastating injury, I cannot stress how important the passing of AB1657 is for the future of therapeutic research discoveries in paralysis. “Roman’s Law” must be supported, so please join in support by cutting & pasting the letter below and send ASAP to Assembly Member Fuentes. 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


We need your letters of support to pass AB 1657. Please write for paralysis cure!

Felipe Fuentes - Chair Democrat-39 (916) 319-2039  Assemblymember.Fuentes@assembly.ca.gov

Cc: [email protected].  

 (Sample letter can be cut & pasted)

Dear Chair Felipe Fuentes,

I, ...... ........, strongly support California AB 1657, a one dollar surcharge on all moving traffic violations to fund the Roman Reed Spinal Cord Injury Research Act.

AB 1657 provides annual funding for research of spinal cord injury and related ALS, Alzheimer's, Parkinsons', SMA and related neurological conditions to be able to one day realize the dream of paralysis cure.

Supported by UC, CIRM, Bob Klein, Irv Weissman, Paul Berg, Craig Newmark, Stem Cells Inc., CA Stem Cell Inc. Hans Keirstead, California Healthcare Institute, Christopher & Dana Reeve Foundation, Art Torres, Duane Roth, Stu Gordon, Shinya Yamanaka, and the USC School of Politics among many others!

There is a clear nexis between 46% of all spinal cord injuries and 60% of children's SCI paralysis, (Mayo Clinic), caused by auto accidents and fining reckless drivers.

AB 1657 creates jobs, brings money into our State and enables the research that is the hope for paralysis cure.

AB 1657 Ensures CA's leadership in Biotechnology. Roman's Law gives CA Scientists the seed money to Prove in principal and establish data to leverage the huge funding sources of NIH, CIRM, etc.

Fiscally Responsible: No State funds. Creates and keeps Whi

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4. Why We Need Your Letters of Support!





Why We Need Your Letters ofSupport!
Help us fund the TJ Atchison Spinal Cord Injury Research Act - you can make adifference in the research for cure by writing a letter of support to yourlocal representative.
Senator Marc Keahey is the authorof the TJ Atchison Spinal Cord Injury Research Act. He will face the budgetbattles, and political debates of why this research is necessary in Alabama. Wemust not let him fight empty-handed.
He needs letters of support fromAlabamians, and also from affected individuals and groups from everywhere—paralysis knows noboundaries. Follow this link http://www.legislature.state.al.us/to search for your representative by zip code.
We ask your help.Here is a sample letter, use all or some of it, if you like, or write your owncompletely. Please write something, and do it soon, please: the 2012Legislative Session begins tomorrow, February 7th. Emailsand ground letters must go out very soon, tonight if possible. Thank you forsupporting the TJ Atchison Spinal Cord Injury Research Act.



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5. The Puzzling Case of the Broken Arm

Robert M. Veatch is the director and Professor of Medical Ethics at the Kennedy Institute of Ethics. His new book, Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge, uses a range of fascinating contemporary and historical examples to reveal how values underlie almost all medical procedures.  He makes a strong case that patients must take a more active role in their treatments, so that their values are met. In the excerpt below Veatch uses the example of a broken arm to demonstrate value judgments in treatment.

Phil was a sophomore in his state’s premier university in a city some hundred miles from his home.  Playing “severe Frisbee” one fall afternoon, he dove for the dis and landed on his right wrist.  He knew instantly that it was broken.  His buddies drove him to the school clinic, where the arm was set.  In a few weeks he was as good as new - almost.

The arm was left with a slight distortion that concerned the orthopedist but did n ot appear to require surgical correction.  The next summer when Phil was skating at a roller rink with his friends, he fell on the arm and rebroke it.  This time the orthopedic surgeon said pins would have to be placed to reconstruct the bone.  The surgery was uneventful.  The surgeon instructed Phil and his parents that he would have to return for the removal of the pins in about a year when the bone was mended.

The following summer the procedure was scheduled for Phil as an outpatient.  Everything went fine.  His now-screwless arm was placed once again in a cast so the screw holes could mend.

In the conversation with Phil and his parents after the successful events, the surgeon made a statement that was rather remarkable, even though neither he nor Phil as first realized all its implications.  He said, “Most surgeons would leave this cast on for about seven weeks, but I found that if you are careful, I can remove it in about four weeks, so schedule an appointment in a month and we’ll get if off.”

Phil and his parents here encounter an amazing array of value judgments made by the surgeon.  Pass over all the judgments not to place the pins after the first break and to place them after the second.  Forget about the techniques used in setting the arm each time, the type of surgery, the anesthesia, the decision to remove the pins after a year.  There is no reason to doubt that each of these decisions easily conformed to the practices of orthopedic surgeons.  Of course, they all involved value judgments, but they were judgments that would probably lead to little controversy.  Let’s focus on the decision about when the cast should be removed.

First, the surgeon says something very controversial.  He announces to his patient what the standard practice is for removing the cast: His colleagues generally removed it after several weeks.  He then tells Phil and his parents that he was going to depart from the standard practice - an announcement that surely would have alarmed the surgeon’s lawyer had he heard it.  Practitioners of modern medicine might be concerned as well.  Modern medicine assumes that there is a correct number of weeks to leave a cast on in these circumstances and that a consensus among orthopedists is good (if not perfect) evidence of how many weeks that is.  In the days of modern medicine, Phil would have been left wondering why he should go with his surgeon’s four-week plan rather than the consensus seven.  Some might even say that the surgeon has not only made a mistake, but foolishly announced the error to the patient.

The new medicine sees the situation differently.  Phil’s surgeon doesn’t actually give Phil a clear reason for this deviation, but we can perhaps deduce it.  He says that if Phil is careful, he can have the cast removed three weeks earlier.  It appears that the surgeon assumes that wearing a cast is an unpleasant experience, so removing it early is a good thing.  Likewise, one might guess that the surgeon believes it is not a terribly onerous task to be careful.

It now becomes clear that there is no objectively correct number of weeks to leave the cast on the arm for this kind of surgery.  The more cast-averse one is and the more comfortable one is trying to be careful, the earlier the cast should come off.  On the other hand, for those who live an active life, are nervous about having to avoid the risk of injury of the unprotected arm, and are not particularly troubled by the cast, a longer period is surely the right answer…

…Something as utterly trivial and devoid of moral controversy as when to remove a cast turns out to depend on the value trade-offs of the one making the choice.  Phil’s surgeon is not making a clear-cut mistake when he deviates from the standard of practice.  If the surgeon is really averse to the cast and really uncomfortable with one on his arm, then he is rationally inclined to get it off earlier.  For him, four weeks may be just the right time (even though his colleagues have made the value trade-off in a way that leads to the seven-week period).  It is not irrational for the surgeon to favor a shortened time for removing the cast, even if he knows his colleagues choose seven weeks and even if he agrees completely with them on all of the relevant facts.

The problem, however, is that it is not the surgeon’s arm that is in the cast.  It’s Phil’s.  Discovering that the decision about when to remove a cast is a value judgment takes it away from the consensus standard of practice of the surgeon’s colleagues, but, logical, it also takes it away from the surgeon.  If a value trade-off must be made between the nuisance of the cast and the nuisance of being careful without it, it should be Phil’s values that get traded off, not those of his surgeon or those of surgeons in general.

If this is right, then we reach a remarkable conclusion: Neither Phil’s surgeon nor the community of competent orthopedic surgeons can know when is the right time to remove Phil’s cast.  In fact, we can no longer talk about an such thing as an all-purpose, generic correct time.

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