princess_muffin: (Default)
Hello World
princess_muffin: (Default)
Parents: MassHealth Won't Pay For Son's Wheelchair

Lynn Family At Odds With Mass Health Over 2-Year-Old's Wheelchair

This is my friend Courtney Davidopoulos' son, Matthew, who suffers from a form of muscular dystrophy called Spinal Muscular Atrophy. The family needs this story told as full-force as possible in order to apply maximum pressure for their arbitration hearing on October 24th - just ten days away!

If you're as outraged as I am by MassHealth's refusal to cough up a few thousand dollars to give a toddler with muscular dystrophy the ability to move around independently and explore his world like any other toddler, then please make your voice heard!

Make this story count. No child should be denied the wonder of discovering the world around them, especially when it's a matter of an insurance company hiding behind red tape, dodging a payout which amounts to a miniscule fraction of their budget.

Here's what Courtney has to say in her own words:

My youngest son Matthew was diagnosed with the neuromuscular disease, Spinal Muscular Atrophy, when he was 8 months old. SMA is a degenerative muscular disorder and the number one genetic killer of children under two. He can't sit unsupported, walk, stand or crawl. It effects breathing, eating and swallowing. However, cognitively these kids are completely unaffected.

Matthew has the most severe type, type I, We were told Matthew would not see his second birthday, he is now 2.5. We were told he would most likely never talk, instead he never stops talking. We have been very proactive in his care and they now consider him a "strong" type I due to his survival and how well he appears to be doing.

Our doctors told us it was time to give Matthew some mobility about 10 months ago. We went through several trials with a demo chair to insure we knew what to order and that he could handle a chair at this young age. Studies have shown not only can children handle a power chair at this age but they do better cognitively and emotionally when compared to their peers who got into power chairs later. We spent six weeks perfecting Matthews equipment and making decisions on our submittal to Masshealth. All doctors and physical therapists involved submitted letters stating Matthew was ready for a power chair and the many reasons why it would benefit him. We submitted the claim cautiously optimistic because we knew masshealths track record with expensive equipment. 7 days later we were declined . The people involved told us not to be discouraged MH always denies first time applications. We submitted more studies, more letters and addressed all of the concerns Masshealth laid out in their denial. 7 days later we were denied again. All involved were shocked not only because of the obvious, matthews condition will not change he will always need a power chair but also because our primary insurance agreed to pay 90 percent of the chair. ( we need masshealths approval even so because if anything were to break on the chair masshealth is responsible for repairs. This is important because if all the specialty equipment on Matthews chair....the joystick alone costs more than $5000.00. We could not as a family handle such repair costs. )

What masshealth wants from us is to see "matthew independant in the community with other children using his power chair without cues or assistance and to drive the power chair in and out of the vehicle we will be using.... again without cues or assistance." There are so many problems with this request...first of all we cannot video him in a chair without a chair, secondly I don't know any two year olds that are completely healthy that can be in the community independantly. Who would even allow a two year to be independent? We are well aware that he would require the typical supervision of any child. If we were to be able to get a demo chair it would not be outfitted properly to support or position Matthew, making it nearly impossible for him to complete the test they outlined. In the letters submitted, it was stated Matthew drove the chair around the hallways of a rehab hospital and around other patients and people. Legally, the government affairs people believe masshealth is also violating federal law. Provision of standards in the Lankford Case, Missouri.

We just received our fair hearing date from masshealth.....set for October 24.

I've known Courtney since second grade - we literally grew up together. In my professional career I've put in the extra blood, sweat, and tears every day to progress research into treating and curing debilitating, terminal diseases, including several forms of muscular dystrophy. So from a professional point of view as well as a humanistic one, I wholeheartedly believe what's happening here is wrong. Utterly wrong. If you believe it too, then please do what you can to make sure both the regional media and the state legislature hear you loud and clear before October 24th.

Help Matthew's family get him the technology he needs to take his very first steps.
princess_muffin: (Default)
Please pass along. Thanks!


Associate Scientist Position: in-life support of pharmacokinetic studies in support of small molecule and biologics drug discovery

Job description

- perform in-life pharmacokinetic studies on novel drug candidates in rodents
- schedules and plans PK studies in collaboration with scientists from project teams
- procures study subjects for the requested studies
- doses rodents via various routes
- take blood samples manually from animals using serial or terminal bleeding techniques
- harvests a variety of specimen (CSF, tissues such as lymph nodes, spleen, brain) from study subjects
- uses automatic sampling equipment (Culex, DiLab) for rodent PK studies
- records and documents study details and animal observation for each study
- prepares and transfers samples for analysis by bioanalytical scientists
- is familiar and complies with all IACUC protocols
- writes amendment to IACUC protocols and prepares reports to the committee
- works closely with the veterinarian and staff in the vivarium to assure health and humane husbandry of all study subjects
- maintains records of performed studies and delivered samples
- assist in implementation of LIMS for PK studies with emphasis on sample identification during origination (barcoding)

Required skills

- familiarity with rodent anatomy and physiology
- experience in executing pharmacokinetic, pharmacodynamic or efficacy studies in mice and rats
- proficiency in accurate dosing of rodents via various routes of administration (IV, PO, SC, IP)
- proven record of serial blood sampling techniques in rats and terminal techniques in rodents
- familiarity with the use of surgically prepared animal models
- surgical skills in rodents a plus
- general understanding of the drug discovery process and the role of animal studies therein
- outstanding organizational skills
- very good verbal and written communication skills across multiple disciplines


- position requires a degree in biology, pharmacy, biochemistry or related with at least 4 years of experience running in-life studies

This is a temporary position which may be converted into a permanent position in the future. If interested, please forward your resume along with a cover letter tocontact info )
princess_muffin: (Default)

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";

If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man my son!

-Rudyard Kipling
princess_muffin: (lost)
"We are all a little weird and life's a little weird, and when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual weirdness and call it love."

On Monday evening, Vance proposed to me and I accepted.
princess_muffin: (lost)
I had the pleasure of working with an amazing woman from Haiti many years ago at Genzyme. She was sent to the US in her mid-teens with her siblings for their safety by her father, a highly political figure in opposition to the regime in power. When I met her she was a fellow scientist studying for certification as an FDA regulatory specialist.

This woman was more alive than any other woman I have ever met. She simply oozed sensuality. She could make love to you with her eyes and bring a flush to your cheeks with just a smile. Despite her fair excess of weight she carried herself with supreme confidence, always glad to tell me stories about the wise women of her village who taught her the healing power of hands and words and songs, of what feeling alive is truly meant to feel like. She lived every day for the joy of living. While plenty could rile or frustrate her, nothing ever got her down. She is the only woman I've ever known to use the full range of inflection in her voice to conjure emotional energy in her audience, as I also try to do. She was something of a kindred spirit. I looked up to her in my mid-twenty-somethings; and even though it's been years since I've seen her, I still look up to her now.

She has been on my mind. I hope she and her family are safe. I can only imagine how the earthquake is affecting her; I hope she is surrounded by good people who are there for her, wherever she may be. If even a fraction of the people of Haiti are as wonderful as she is, then far more has been lost from the world than just human lives and livelihoods.
princess_muffin: (Default)
Best. Birthday present. EVAR!

Fresh-baked Honey Wheat bread with dinner :-D

With so many struggles and horrible things happening right now, a little victory goes a long way.
princess_muffin: (Default)
Submitted for consideration, from a friend's note on Facebook, Helicopter Parents and the Rising Counter Culture.

Parenting is perhaps the most sacred duty any human being can take upon themselves. When producing a new human life into this world or assuming full responsibility for one, the stakes are about as high as they can get. Yet at times the thought of entering the parental arena fills me with dread and disgust, for the very reasons this article quotes.

How did you, gentle reader, develop your parenting or child-supervising skills? Did your own experiences growing up, color your thoughts on this topic as an adult? What shaped your opinions on right and wrong parenting decisions; books, the media, other parents, your own parents? Do you have children of your own? Are you (like me) playing a key caring-adult role in a child's life with occasional parent-like authorities and privileges?

Also, for my teacher friends out there: How would you rate the spectrum of coping, problem solving, personal safety, socializing, and academic skills found in kids these days? Is over parenting a true plague as the media makes it out to be?
princess_muffin: (Default)


princess_muffin: (Default)
Caught them on camera in their daily "hey mom's awake let's go bother her first thing in the morning!" routine...

Posted to lolcats, this is my favorite so far:

princess_muffin: (Default)
Huzzah! In late-stage negotiations for a contract job that starts next Monday, working with Oracle JD Edwards EnterpriseOne:
  1. Does anyone have experience with Oracle ERP products, or this one in particular?

  2. What do I need to know about Oracle's ERP quirks? What were your successes and failures?
I want to speak intelligently with the client in these last days of haggling, any insight would be tremendously awesome :-)
princess_muffin: (Default)
Mike had his surgery last Tuesday. It was a tough procedure but he's recovering well. The doctors were able to excise one of the two new lumps in his chest but, sadly, not the other. Now they're waiting for biopsy results before moving forward with chemo. Why the results are taking a week (and maybe more) to come back is a mystery.

I keep hoping, perhaps hopelessly, that the words "benign" and "clean bill of health" will show up in the report. In the meantime Mike is feeling pretty good since he's in between rounds of chemo. Karen and Derek and the family are doing the best they can to get by in the midst of all this uncertainty. We're all, just... waiting.

from Karen

Jun. 1st, 2009 09:53 pm
princess_muffin: (Default)
"Thank You... Mike and I were very touched by your gift... [the lj post and supportive comments from so many people]

"I will call and give everyone the all clear when Mike is out of surgery.

"P.S. I am not into the praying thing, but send one our way. Mike needs it."

Please continue to keep Mike in your thoughts and prayers. Surgery begins first thing in the morning, it is likely to take many hours to complete and many days to recover before he can start the next round of chemo.

I pray that he may dig deep down and find the spoons to flood himself with enough healing energy to win this fight - spoons lent from family and friends, more than he ever knew he had, more than he ever imagined possible.

My mom and I are taking Derek out for ice cream tomorrow just before lunchtime (since I am his godmother and auntie all rolled into one) at Kimball's Farm. She is keeping him for the week while his mom and dad focus on the business at hand. Honestly I think the trip is more for mine and my mom's sake than Derek's, we both want to see him all smiles and squeals of delight tomorrow.
princess_muffin: (Default)
My Friends,

You may already know that my sister's beloved, Mike, has cancer.

Though he has braved surgery and months of chemotherapy, the fight is growing tougher. On Tuesday he will be undergoing more complicated surgery followed by much more aggressive chemo. This is a critical point in his treatment.

Mike and my sister Karen have a wonderful relationship and a beautiful son, Derek, just over a year and a half old.

Mike is almost certainly the friendliest, funniest, most lovable person I have ever met. We could not have asked for a better man for my sister or a happier ever after for the both of them. He needs the love and support of every single person who reads these words right now because the road ahead is dark and uncertain and cannot be conquered alone.

Please, take a moment here to express encouragement, healing, love, happiness, and well-wishing to Mike. Lend him a bit of space in your thoughts and your prayers so his way through this may be made easier. I will present this entry and all its comments to him on Tuesday before he goes to the hospital. I know, as you may also know, that such buoyant energies can truly alter the course of a person's life.

Many thanks to you all,

princess_muffin: (Default)
Dear March,

Enough with the lion. More with the lamb please.


princess_muffin: (Default)
And while we're on the subject of WPI history:

Got a call yesterday about the Class of 1999 reunion...

What do folks think about participating in such festivities?
Have you ever attended one of your reunions? How did it go?
What made you decide to attend or decline?
Could anything have changed your decision one way or the other?
princess_muffin: (Default)
Singing solo, a capella, in front of an audience - Check!

It didn't entirely suck either :-)

(To be fair, I was in a game playing a singer who had just recovered from losing her voice for several months, so I didn't warm up or stand properly or do any of those fundamental "singing technique" things so as to sound a little weaker/off-key at the starting and ending moments of stanzas; but as an overall effect it won the hearts of the crowd. I totally made grown men cry -- I WIN AT LARP!)

So it turns out that singing is just as huge a performance rush as bellydancing. Been flying high on a bright ball of glowing brain buzz all day from it 8)


Feb. 10th, 2009 12:00 am
princess_muffin: (Default)
Organizing Intercon Z: It's like herding cats. Cats with day jobs.

History will tell, but I believe this shall be one of my better and more rewarding storyteller performances. In spite of an astounding avalanche of life occurrences there is no one responsibility that has fallen behind this year. February/March has traditionally been the lowest point on the calendar; if tradition holds, then it only gets better from here on in. I can live with that.

The tightrope walker knows that in hefting the cumbersome pole he finds his balance.
princess_muffin: (Default)
It's official -- I'm buying [ profile] lady_cassia and LordEdward's house!

The paperwork is signed. [ profile] getoffended and I can move in March 1st (but of course we'll hold off a few days because it's Intercon weekend). Boxes will be needed. Movers will be hired.

For the forseeable future I will rent out my condo, dabbling in the dark arts of landlording so as not to lose a ridiculous amount of money in shrunken equity. [ profile] drdt has been an invaluable resource for learning the legal ins and outs of property rental, as has my excellent lawyer, my mortgage broker, and my constant companion Teh Intarwebs.

This was always part of the plan for the condo, even as I was buying it back in 2003, which is why I've taken pains to ensure the expenses of owning the place were reasonably close to the going rental price for comparable condos around town - though I must admit I'm not fond of having little other choice on the matter of what to do with the place. It's not that I can't sell; it's just that I would barely regain my initial downpayment at this point, if I could even sell at all in this market.

So. Yeah. Life...

It's fair to say that [ profile] getoffended was never part of any long-strategized plan for the future. But sometimes the best things in life just fall into place on their own. When everything else is in order, there's space and time and energy enough to allow in the unexpected surprises.
Page generated Oct. 21st, 2017 06:23 am
Powered by Dreamwidth Studios