Saturday, November 14, 2009

Qu'est-ce que c'est?


Au départ, je me suis dit qu’il s’agissait d’une image de la NASA. Peut-être une éruption solaire. Je me suis même demandé s’il était possible de trouver une version en haute-résolution pour en faire un poster. Puis, j’ai compris ce que c’était.

Quand j’ai compris qu’il s’agissait en fait d’une image thermique d’un humain qui dégaze, mes idées de décoration se sont envolées. Le pire, c’est que j’ai l’impression que je viens de vous faire la plus mauvaise blague du monde sur les prouts en partageant cette photo avec vous. Pardonnez-moi.
'



I most appreciated the following commentary at the site of the "original" artwork posting:

-- Dites-moi, ne serait-ce point là un fessier féminin?

-- Le mythe [des] femme[s] princesses est désormais détruit.





*merci à Norédine, de Gizmodo.fr



Just for fun, or possibly as an effort at personal redemption, check out these images of volcanoes (a comparable category?) located in the gallery of the ASTER website.


"ASTER (Advanced Spaceborne Thermal Emission and Reflection Radiometer) is an imaging instrument flying on Terra, a satellite launched in December 1999 as part of NASA's Earth Observing System (EOS). ASTER is a cooperative effort between NASA, Japan's Ministry of Economy, Trade and Industry (METI) and Japan's Earth Remote Sensing Data Analysis Center (ERSDAC)."

Of being numerous

Photos of and by Brother-Unit Tumbleweed, from his blog American Idlyl.











POEM from Of Being Numerous
by George Oppen


6.
We are pressed, pressed on each other,
We will be told at once
Of anything that happens

And the discovery of facts bursts
In a paroxysm of emotion
Now as always. Crusoe

We say was
‘Rescued’.
So we have chosen.





7.
Obsessed, bewildered

By the shipwreck
Of the singular

We have chosen the meaning
Of Being Numerous.


9
‘Whether, as the intensity of seeing increases, one’s distance from Them, the people, does not also increase’
I know, of course I know, I can enter no other place


Yet I am one of those who from nothing but man’s way of thought and one of his dialects and what has happened to me
Have made poetry


To dream of that beach
For the sake of an instant in the eyes,


The absolute singular


The unearthly bonds
Of the singular


Which is the bright light of shipwreck



25
Strange that the youngest people I know
Live in the oldest buildings


Scattered about the city
In the dark rooms
Of the past—and the immigrants,


The black
Rectangular buildings
Of the immigrants.


They are the children of the middle class.


‘The pure products of America—’


Investing
The ancient buildings
Jostle each other


In the half-forgotten, that ponderous business.
This Chinese Wall.



26
They carry nativeness
To a conclusion
In suicide.


We want to defend
Limitation
And do not know how.


Stupid to say merely
That poets should not lead their lives
Among poets,


They have lost the metaphysical sense
Of the future, they feel themselves
The end of a chain


Of lives, single lives
And we know that lives
Are single


And cannot defend
The metaphysic
On which rest


The boundaries
Of our distances.
We want to say


‘Common sense’
And cannot. We stand on


That denial
Of death that paved the cities,
Paved the cities


Generation
For generation and the pavement


Is filthy as the corridors
Of the police.


How shall one know a generation, a new generation?
Not by the dew on them! Where the earth is most torn
And the wounds untended and the voices confused,
There is the head of the moving column


Who if they cannot find
Their generation
Wither in the infirmaries


And the supply depots, supplying
Irrelevant objects.
Street lamps shine on the parked cars
Steadily in the clear night


It is true the great mineral silence
Vibrates, hums, a process
Completing itself


In which the windshield wipers
Of the cars are visible.


The power of the mind, the
Power and weight
Of the mind which
Is not enough, it is nothing
And does nothing


Against the natural world,
Behemoth, white whale, beast
They will say and less than beast,
The fatal rock


Which is the world—


O if the streets
Seem bright enough,
Fold within fold
Of residence ...


Or see thru water
Clearly the pebbles
Of the beach
Thru the water, flowing
From the ripple, clear
As ever they have been



29
My daughter, my daughter, what can I say
Of living?


I cannot judge it.


We seem caught
In reality together my lovely
Daughter,


I have a daughter
But no child


And it was not precisely
Happiness we promised
Ourselves;


We say happiness, happiness and are not
Satisfied.


Tho the house on the low land
Of the city


Catches the dawn light


I can tell myself, and I tell myself
Only what we all believe
True


And in the sudden vacuum
Of time ...


... is it not
In fear the roots grip


Downward
And beget


The baffling hierarchies
Of father and child


As of leaves on their high
Thin twigs to shield us


From time, from open
Time

Thursday, November 12, 2009

This Blog Is In Desperate Need Of Big Moose Pictures





Roxana, who also claims to go by the unlikely moniker of "Nanny," has given me permission to publish these unshopped photos of a moose. She is the photographer. I would have not been able to hold the camera steady as I would be very busy trying to adjust my location to a point much, much farther away...



In any event, I find that pneumonia and friendship drama both respond well to the distraction of big moose pictures.


















This is Roxana's commentary on The Creature:


They grow them big in Manitoba ! Man! What an animal.....his hind legs are like tree trunks !!

By the length of his beard and the grey legs, I figure he must be over 10 years old. He looks to be well over 8 feet at the top of the shoulder hump,and with his head up the height to the top of his antler must be about 12 feet .This guy is king of the forest, no bear or pack of wolves would dare come after him when he has this rack.

Considering that a dirt road can fit 1 1/2 cars across ... this fellow is HUGE. THIS IS ONE BIG BOY!

THE PICTURE WAS TAKEN IN ELLIOT LAKE
Yes it is a regular size dirt road.

The Dissolution of a Friendship

Sorry, but I remain in the Netherlands of Inspiration.

I did not think it would impact me, but there has been a huge mental hit due to... how to put it? Due to the Disillusionment of Friendship.

I almost reached the point of having to put the word friend -- and all its derivatives -- forever between quotation marks.

We all know, however, that adding to the pandemic of twitching-fingers-in-air would be a bad thing. Just picture the horrendous headtilt and voice-lilt of the entre-guillemets. {InvoluntaryShiver}

Taking some time for reflection, remembering how I have considerably sullied the word in my time, I managed to at least get rid of the accretion of emotions, the feelings of betrayal, the fatigue at the drama, the disgust at the lies.

No, the friendship has not survived and will never be renewed, but at least I am not going to take myself down with it. I am much too adept at being disillusioned as it is and do not require unsolicited outside assistance!

Tuesday, November 10, 2009

One, Two, Three: Breathe!


Thank you to those who have written, wondering where the heck I have been hiding out! It certainly is not beyond the realm of possibility that I might have gotten lost inside The Manor itself, or that I might wander The Grounds, witless.

Fortunately, I have been safely ensconced in bed, though I suppose "witless" might apply.

I was unusually crabby (Okay... go ahead. Get it out of your system.)

Ahem. I was unusually crabby last week, and felt pretty awful in terms of bone pain and wayyyyy increased skin sensitivity. I couldn't get a handle on things, and so was in minute-by-minute mode.

What a surprise to start coughing up blood in the middle of the night!

That's one way for the body to definitely get my attention.

A nice little pneumonia developed over the next few hours. Thankfully, my doc and his nurse were on the ball, and got me quickly started on an antibiotic.

So it has taken a few days of staring blankly and eating recuperative yogurt, but I have finally emerged on the other side.

When life began to bottom out last week, I was struggling with a long blog post. I have definitely lost the threads of my thought but plan to rework it today or tomorrow. Not that I want you to think that any thought whatsoever goes into these pieces.

I'm just sayin'.

Until such time as I return to Full Babel, explore the archives!

Wednesday, October 28, 2009

Illinois House Bill 9 (Public Act 96-0605)

RSDS legislation signed into law

Illinois Governor Pat Quinn has signed legislation that seeks to raise public awareness of a painful neurological disorder. House Bill 9 (Public Act 96-0605) targets Reflex Sympathetic Dystrophy Syndrome (RSDS), a chronic syndrome characterized by severe burning pain, changes to bone and skin, tissue swelling and extreme sensitivity to touch that, if untreated, results in permanent deformity and severe pain.

The new law will create an educational program to raise public awareness of RSDS which focuses on the nature and possible causes of the syndrome, the risk factors that may contribute to its development, various treatment options, and the availability of treatment and support services.

Dahl took the legislative lead in advancing the measure at the request of Bea Danko, a Streator resident who lives with RSDS. The Senator met Danko at an RSDS support group meeting in 2008, and agreed to sponsor legislation to promote awareness of the syndrome stressing the importance of early detection, diagnosis and treatment.

“Bea deserves enormous credit in moving this bill forward,” Dahl said. “When similar legislation I sponsored last year got bogged down due to political games, she kept the pressure on lawmakers to do the right thing. It was an honor to work with her in getting this legislation passed and signed into law.”


Please understand that I've spent the morning preparing for my first ever DIY home surgery, involving the elimination of my right leg. I was poised to hop on over to YouTube, where surely I would find a plethora of instructional videos on amputation, when I decided to check my email. I might be in too much pain later to take Broatch, of RSDSA fame. Included therein was this announcement of one more instance of "awareness" legislation, this time in Illinois.

Clang ,clang, clang went the trolley!
Ding, ding, ding went the bell!


Two points, that's all:

1. It's a disservice to continue to use the term RSD/RSDS in lieu of CRPS. At least recognize the dual designation of CRPS/RSD(S). Initially, I also resisted the term, but once i realized that RSD(S) continues the advancement of Wrong Science and ordinary misunderstanding, well... at the very least, using the term CRPS creates the consistency necessary to support applications to Social Security, and lays the foundation for proper comprehension of the disease as it progresses.

[It is insufficient to just say, "Oh, CRPS Type 1 is RSD; Type 2 is causalgia." No, we need to explain the sympathetic nervous system's involvement or noninvolvement, explain about SMP and non-SMP! Yes, it can be gnarly, and tedious. And remedial! I just visited the website of a prominent medical school pain management department, where I found this as the complete explanation of the term CRPS: "Previously known as causalgia or RSD, reflex sympathetic dystrophy. Pain is caused by abnormal activity in the sympathetic nervous system." I am not sure where the effort to inform needs to begin!]

2. This isn't really a "point." It's more a quick Vent. A few years ago, someone spearheaded an attempt to get a similar bill passed in the Illinois legislature. There was a problem... I can't remember who killed the bill, who wouldn't allow it to the floor for debate/vote... Oh, wait!

Someone with the name of Obama, if memory serves...

Monday, October 26, 2009

30 Republican Rape-Nuts

The Daily Show With Jon StewartMon - Thurs 11p / 10c
Rape-Nuts
http://www.thedailyshow.com/
Daily Show
Full Episodes
Political HumorHealth Care Crisis



Franken's amendment ended up passing, 68-30. Here's a list of the Senators who showed broad support for Roman Polanski by voting against it:

Alexander (R-TN)
Barrasso (R-WY)
Bond (R-MO)
Brownback (R-KS)
Bunning (R-KY)
Burr (R-NC)
Chambliss (R-GA)
Coburn (R-OK)
Cochran (R-MS)
Corker (R-TN)
Cornyn (R-TX)
Crapo (R-ID)
DeMint (R-SC)
Ensign (R-NV)
Enzi (R-WY)
Graham (R-SC)
Gregg (R-NH)
Inhofe (R-OK)
Isakson (R-GA)
Johanns (R-NE)
Kyl (R-AZ)
McCain (R-AZ)
McConnell (R-KY)
Risch (R-ID)
Roberts (R-KS)
Sessions (R-AL)
Shelby (R-AL)
Thune (R-SD)
Vitter (R-LA)
Wicker (R-MS)

ADDENDUM: It's been pointed out to me that the U.S. Chamber of Commerce lobbied against the Franken amendment as well:

Republicans point out that the amendment was opposed by a host of business interests, including the U.S. Chamber of Commerce, and applies to a wide range of companies, including IBM and Boeing.
I guess we must cover up crimes like rape in order to save capitalism.



Read more here.

Saturday, October 24, 2009

Ecolalia


simple serendipity

The Emoticon: A Touch of Class...

Is it just me, or does it take a fair amount of insensitivity to leave this comment after a brilliant, heartfelt post announcing the death of a blogger's mother?

Sorry for your loss :(

Friday, October 23, 2009

Voice of Frustration

This is the text of an email from Anthony F. Kirkpatrick MD PhD (via Tony Tobin):

FDA approval of ketamine coma therapy
From: Anthony Kirkpatrick MD, PhD
Sent: 13 October 2009 14:37:54
To:

Today, a physician in Australia wrote the following:

"I hope the FDA sees the light and approves the Ketamine coma therapy in the U.S before too long...good luck and keep up the great work."

My reply:

"In my opinion, the FDA will never approve a disease specific indication for ketamine such as CRPS because there is no patent protection and, therefore, no money to be made by a drug company in going through the FDA approval process for a specific disease state / diagnosis.

There is little financial incentive for the FDA to approve ketamine for a specific pain diagnosis without a drug company supporting the New Drug Application (NDA). More than 60% of FDA's budget comes from drug companies. Check this site out:

http://www.rsdfoundation.org/en/research.html

Thirty years ago, the FDA approved ketamine for a specific route of administration (IV) and dosage range up to and including general anesthesia to treat breakthrough pain regardless of the underlying disease state / diagnosis.

Forget about the FDA ----- it is not the solution. Third party payers (e.g., Australian, US Governments) are likely to reimburse patients for ketamine treatments with the publication control studies like those found here:

http://rsdhealthcare.org/PatientInfo/outpatient_ketamine.htm

It is unlikely that a study with an active placebo control (e.g. midazolam, fentanyl) conducted in the ICU will ever take place from an ethical standpoint given that ketamine has already been proven effective at a low dose for treating CRPS on an outpatient basis. Under this circumstance, how many patients with CRPS would volunteer to be intubated and mechanically ventilated for 5 days in the ICU with an active placebo instead of ketamine?"

A. Kirkpatrick, MD, PhD

www.rsdfoundation.org
www.rsdhealthcare.org

Men!

Truly, I don't want to sound like one of those women who routinely heave sighs before languidly kvetching: "Men!" I don't roll my eyes, either.

In my situation, it's either gonna be frustration with Fred, or frustration with La Bonne et Belle Bianca Castafiore -- so it's even odds that you'll hear "Men!" or "That Castafiore!" -- an exclamation of gender exasperation versus something altogether beyond gender, and very singular.

What's it gonna be today? I feel like snarling, "Guess!" -- but that would be rude. So let's go with:

Men!

Please allow me to trace the progressive locations of what began as a pile of dirty clothes. What day is it? Ah, ever-blessèd Friday.

On Tuesday, I was not feeling well. Believe it or not, my degree of well-being has a fair bit of variance to it! It's okay, with only this blog as a source of information? There's no way you could know!

Anyway, I nonetheless felt compelled to take on a few housekeeping tasks, among them, throwing some of my dirty clothes into the washer. That's not all that difficult an undertaking. Sometimes, though, due to my issues with arms and shoulders, I am not able to lift the weight of the laundry when wet, not able to transfer it to the dryer.

So Fred is accustomed to my requests for assistance and is normally great about doing that for me, as well as getting the dry clothes out and putting the finished laundry on our bed so that I can fold it. (Okay, so sometimes my arms and shoulders, or the lack thereof, prohibit the folding, as well.)

Dear Gentle Readers, allow me a moment of meditation about the bed.

Oh bed! oh bed! delicious bed!
That heaven upon earth to the weary head
--Thomas Hood

Sorry! Some people experience the Call of the Wild. Moi? The Call of the Bed. We frequently swap out headboards and other design elements, here at Marlinspike Hall, deep, deep in the Tête de Hergé (très décédé, d'ailleurs) -- yes, I got the memo from the Archduke, that trickster! Bed changes are especially common during the shift of seasons, when we also break out whatever linens are more appropriate to the new range of temperatures.

The Castafiore actually discovered the bed that Fred and I are currently rolling around in -- we call it a "reproduction" because it's a hodgepodge of styles and inspirations, but the suspicion is that it's an original (original what is the question). The posts fairly scream "British Isles, most likely Welsh! Tra La La!" The headboard proper is Gothic, and by that, I do not reference waxy-black lipstick or dog collars, though it is a look I admire. There's a classic barley twist to the posts -- slender, tapering, meandering, all bendy-like. The panels were made from Flame Mahogany, which all you furniture nuts know better as "crotch-cut": "'Flame' or 'crotch-cut' mahogany is cut at the crotch where a limb protruded from the trunk of the tree, producing a flame-like figuring. It is a cutting technique also used with other fine hardwoods, including walnut, and is extremely expensive, given the small number of major limbs on any trunk. It is a hallmark of quality in furniture construction and is highly-prized for its inherent beauty."

The finials defy description. Yes, I am stumped, rendered mute, by finials, of all things.

In case you are wondering? Why, *yes*, I am having trouble sleeping, even in our fine, fine bed. What was your first clue? Part of it may be that I have been combining all the recent Mother-Unit health emergencies, and their incumbent increase in Stressed Family Contact, with a previously planned drug holiday. Why did I proceed with the drug holiday? I really don't know. Pig-headedness, perhaps. Plus, the whole point is to see what changes when a medicine is withdrawn... and announcing the probability of change spoils the effort.

Yes, Fred has been with me through thick and thin, through neurotic and reasonable. Okay, so let it be established that Fred is a StudMuffin! There, are you happy now? I know I need to do a better job of singing his praises.

If you would kindly stay on message, keep on track? Is that too much to ask of my esteemed readership? Snark and snarl, snarl and snark!

Harrumph.

For some reason, we were having an unacknowledged fight on Tuesday -- a fit of pique rumbling around, inchoate. I cannot even recall the slightest detail of my dissatisfaction but could make a stab at guessing -- the divergence of our schedules, my anger at being waked, his anger at my whining about it. Mother's illness, conflicting feelings là-dessus. The aforementioned drug holiday -- which he might not have known about. Knowing in advance leads to things like extended trips to Sam's Club [still something of a novelty in Tête de Hergé (très décédé, d'ailleurs)] and sudden interest in hour upon hour of American Football.

Given all that indeterminate junk, I chose to leave him a note under his coffee cup -- "Please transfer clothes from washer to dryer. Thank you."

You do remember the laundry, don't you? As in: it all began on Tuesday, with a pile of dirty clothes...

Later, I trained my ear in the direction of the Laundry Suites -- and heard the reassuring rumblemumblerumble of the clothes tumbling in the dryer. As I often do, I promptly forgot about it. I've been absolutely spoiled by Fred's willingness to pitch in and help me finish the tasks I start.

A neverending dispute that vacillates between being of moderate and minor importance? Fred tosses his towels in the dryer everyday after he showers. The towels are not clean, though he argues that they must be, as they have only touched his impeccably clean skin. My issue is that they *smell*. True enough, it is not noticable to anyone but me... but I count, don't I? I really dislike putting anything in the dryer after he's done his towels.


He peppers me with dissent, his favorite question being: "And just what do they smell like, Ms. Smarty-Pants?"


Like Dirty Boy! Like Locker Room Chic! Like Stale Eau de Man!

Anyway, Wednesday afternoon, after his shower, I remembered the load of clothes from the day before, only when I happened to hear some noises of dissatisfaction emanating from the laundry suites. Oops! He wanted to toss in those nasty wet towels but found my clothes still hanging out in the dryer.

I was feeling evasive, so I evaded. After he left for his regular Wednesday night church meeting, I puttputted out there and discovered my clothes piled on top of the washer.


The phone rang. It proved to be yet another Important Call, all about organs and pathology and various failures to communicate and and I forgot about my clothing, yet again.

Yesterday morning, as I cursed my inability to sleep, it occured to me that maybe folding clothes would put me back into a restful mode (due to the repetitive, dull nature of the task), so I headed out, making a ghostly appearance in that famed first century AD Roman mirror of blown glass coated with molten lead, that serves as a sort of night light for the passageway to The Laundry Suites.

Even mundane things take on amplified affect around the Haddock Family holdings! We are faced with such dissonance daily -- the plastic tumbler sweating rings on the Corinthian capitals of the neoclassical mantel in the Renaissance Rec Room comes to mind, or the collection of toothbrushes atop the antique marble Holy Water basin (recycled religious antiquary having well served the earliest plumbers at work in Marlinspike Hall).


Examples, I'm full of 'em. {sniff}


The dryer was empty.


There were no clothes on top of the washer.


The laundry basket, likewise, was but a void.

How mad had he been? I wondered.

Marlinspike Hall is beyond huge. I rode around, peeking in the Carriage Room, the various ballrooms, even checking out Captain Haddock's private wine cellar, accessible only by elevator from the Cigar Room. (Oh, the joys of maintaining those separate ventilation systems! Why he linked up these spaces that each require vastly different humidity levels is beyond me...) No, there were no shirts among the humidors, no pants craddling the pinot noir. No sign of my clothes anywhere. No bras air-drying from chandeliers, no socks strung up on deer antlers.

The sun was up by then, as was my ire, and so I indulged in coffee and a good book for a few hours. I even managed a nap, during which I vaguely heard Fred stumble out of the bedroom, down a few hallways toward the Main Manor Foyer, outside, across the drawbridge, all the way out to the mailbox by Haddock Way.


What? I have excellent hearing... in my sleep.




His treks to the mailbox are famous for their regularity and the fact that he's yet to undertake the journey while awake.

The rest of my day was devoured by endless minutia, more pain than my mind could tolerate, and the search could not resume until today. Fred proved unfazed by my best-to-date efforts at The Silent Treatment.


I had been abed for six hours when he climbed into Our Welsh Four-Poster at 7 am, but none of those hours included any sleep.


"I'm going to hold your hand," he warned. This is a habit developed from familiarity with CRPS. Try and touch me without this advisory and I'm not responsible for the ensuing carnage.


We murmured back and forth, with plenty of soft spaces for listening, and yes, he held my hand.


Our differences patched, we dozed. I didn't sleep long, but I slept well.


I sat in the funkified Breakfast Nook, a loop off of the Medieval Kitchen (and the only place in the Manor dressed up with wallpaper), and could not keep my mind from wandering back to the problem of my missing laundry. Laying next to Fred, I hadn't wanted to sully our sweet reconciliation with demands for tee shirts and undies, and he continued to act as if no details remained to be negotiated.


It was becoming difficult to ignore, my lack of clean clothes!


Still, I decided nothing would tarnish the beautiful beginning to this day. Mother is going home from the hospital this afternoon (we hope); My drug holiday has been tempered with various realities (that is, I allowed myself breakthrough pain medication, which provided a bit of peace to the rest of the household); and I decided it to be worth my while to toss his offensive Man Towels into the wash... Should I ever do laundry, again, that is.


Before anything else, I needed to shower and don my last decent outfit of sweat pants and a former lovers' oversized soft sweater.


I tiptoed my wheelchair into Our Suite and over to our most modern piece of furniture, a cedar-lined, simply-designed wardrobe.


Fred was blowing bubbles in his sleep...


And my clean clothes were neatly folded within. They had that settled look of having been there a good while.


I haven't decided yet whether or not to confess my pettiness. After I fix his favorite meal, laugh at his bad jokes, and plant kisses on my beloved's pate -- I'm sure the right thing to do will come to me.


Men!




photo credit

Wednesday, October 21, 2009

The Voca People meet Butterscotch and Roxorloops

"The Voca People is a new international vocal theater performance combining vocal sounds and acapella singing with the art of modern beatbox."




And now... the awesomeness of one-person beatbox: *butterscotch* and Roxorloops -->





BOO!

Tuesday, October 20, 2009

RSDSA Launches Major Study

...on the Natural History and Long-Term Health Effects of CRPS

The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) launched an Internet-based study entitled Long-Term Health Effects of CRPS: A 20 year Cross-sectional and Longitudinal, Observational Cohort Study, funded by a grant from the Brodsky Family Foundation. The study design is patterned after the registry database conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS) Project, which has 34,000 participants. A previous Internet-based survey studied 1,300 people with CRPS, of whom about 1,000 participated in a follow-up questionnaire. RSDSA hopes that the new study will attract many more participants who will share their experience with CRPS for the benefit of all.

Anyone with the diagnosis of CRPS Types I and II can participate via... the study website. Potential participants, who are not familiar or comfortable with Internet-based communication, can contact the study's Project Manager to obtain paper forms for registration, consent and enrollment. Participation is voluntary and anyone can withdraw from the study whenever they wish. Each year, the participants will be asked to answer questions about their health and health-care utilization, treatment, and how CRPS is affecting their health and wellness. Participants do not need to submit medical records to register for the study, but we may request medical records to confirm information in the database. All questionnaires and records are confidential and securely held according to HIPAA and WIRB* provisions.


This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.


*Western Institutional Review Board