Thursday, October 1, 2015
This expensive drug -- which costs a quarter of a million dollars every year -- may not be a cure for Cystic Fibrosis but it is the closest thing so far. It's actually a double drug. A couple of years ago, a Boston company, Vertex, released Kalydeco (ivacaftor), a drug that helps correct the genetic defect in about 5 percent of CF patients. Orkambi, also released by Vertex, adds lumacaftor to ivacaftor to expand the effectiveness to the vast majority of CF patients. Clinical trials showed the combination to be somewhat effective, increasing lung function about 4 percent, but not as effective as the 10 percent increase that Kalydeco delivers to patients with the rarer genetic defect.
Nevertheless it's a huge dose of hope to CF adults, whose days have been filled with medications and therapy treatments since they were infants.
First of all, I want to thank God for keeping Ryan safe through 38 years, way beyond the predictions, so he could live long enough to see this medical advancement. I want to say thank you to everyone who ever supported me in one of those annual CF walkathons because your donations really did help provide research. And I am grateful to the scientists who have made these discoveries. Of course I appreciate Vertex for producing the drug, but I am concerned that the outrageous price is more about greed than need. I pray that wisdom will prevail and this life-saving drug will be available to all who need it.
As I blow out the imaginary candles on my fantasy cake (thanks to Diane Carroll Burdick for the ones in the photo!!) I wish for this drug to work its magic, to go into every cell and make those ion transfers work so the mucus that lubricates my son's exocrine system will no longer be sticky and trapping infections. And God's masterpiece machinery will be returned good working order.
Posted by Sue Merrell at 11:02 AM
Sunday, September 27, 2015
Although the book is released in conjunction with ArtPrize and includes Cari Povenz's photograph of one of last year's ArtPrize entries on the cover, the anthology isn't an official part of the competition. It's too bad that ArtPrize doesn't have a writing component. ArtPrize has expanded over its seven years to include film and music, but not writing.
What a shame!
All art begins with story. It's what the painter strives to capture, what the melody conveys. It's what moves the movies.
These writers don't have a number for you to punch in your vote, but you can support the art of writing by picking up a copy of "Imagine This!" for $16 at the Grand Rapids Art Museum or the Art Prize Hub.
|Michele Smith-Aversa reading her submission. Photo by Lawrence Heibel.|
Posted by Sue Merrell at 6:11 PM
Wednesday, September 23, 2015
And yet, you might ask, how can I deny them half a star? Why did I give this show a 3 1/2 star rating instead of the full four? In my review in the Press, I call it a high-energy spectacle that makes you want to cheer. What else is there? Dare I expect more?
These are the debates I have with myself in the wee hours of the morning. Four stars is like falling in love. When it happens you know it. You don't have to explain it.
And that's the way I feel about "Newsies" most of the time. Thrilled. But I'd be lying if I didn't say it disappoints sometimes as well. There isn't one song that stands out, that I'm still humming on the way out the door. The score is adequate but a little too much like many other scores. The lyrics in "Carrying the Banner" are "It's a fine life carrying the Banner," with the whole scene echoing "It's a fine life" in "Oliver!"
These newsboys certainly can dance, reminding me of the striking miners in "Billy Elliot." But the miners use dance to deliver a terrifying fight, while the newsboy's brawl is about as convincing as a paper tiger's growl.
I know, I sound like a miserly Pulitzer counting pennies instead of seeing the big picture, which is an inspiring tribute to the little guy's never-ending battle for respect. So keep your eyes on the prize and enjoy "Newsies." Don't allow half a star to dim your fun.
Posted by Sue Merrell at 10:44 AM
Wednesday, September 9, 2015
But if you are wondering what was jiggling back when Civic produced its first show in 1925, look no further than this season's opener, "The Great Gatsby." That's right. F. Scott Fitzgerald's infamous tale and Grand Rapids' iconic theater are both celebrating their 90th anniversaries this year. Isn't that just the bees knees?
Actually that's Costume Designer Robert Fowle's knees in the photo above as he described some of the spiffy "Gatsby" fashions Tuesday night for a dizzy "Dish" of local media and theater fans. Imagine, that's how the theater's original patrons dressed and talked. Makes one wonder what those early productions were like.
The show opens Friday so get a wiggle on! You don't want to miss this one!
Posted by Sue Merrell at 10:07 PM
Tuesday, September 1, 2015
|David Kiley of New Roads Media|
With a clean notebook, anything is possible.
I thought of that last night as I visited my friend Kym Reinstadler at her new place in Ann Arbor. Kym and I had been coworkers at The Press for 20 years. But a few months after my retirement in 2009, she was caught in the cutbacks and has been looking for steady work ever since. With a new Masters in Library Science, she landed a position with ProQuest, an international company that aggregates information and databases. Gee, it's even a new language.
We spent the evening at the Wilde Awards in West Bloomfield. The annual event, sponsored by Encore Michigan, celebrates professional theatre across the state.. I've been reviewing shows for Encore Michigan ever since I retired from The Press but this was my first time to travel across the state for the annual shindig. It's a big year for Encore Michigan. Just when it looked like it might fade away, a new owner, David Kiley, came along full of enthusiasm for assuming the arts coverage that has been dropped by mainstream media. He even has plans to partner with Detroit Public Television to get theater before the masses.
One of the big winners of the evening was Kurt Stamm, artistic director for Mason Street Warehouse in Saugatuck. Kurt received the Founder's Award for theater dealing with LGBT issues. I remember when Kurt and his business partner Tom Mullen called me at The Press back in 2002 and said they were going to build a professional theater in a former pie factory. I visited the site and the task seemed insurmountable. It was a big refrigerator! But it had a good location right on the bay next to downtown. And they had a vision of putting on really good theater. Now, I can't imagine Saugatuck without Mason Street Theatre, it's that much a part of the fabric of the town.
Life is all about starting over, reinventing yourself, the new semester.
Posted by Sue Merrell at 1:12 PM
Saturday, August 15, 2015
The most famous ancestor in my family genealogy project is probably Elijah Craig, my son's gggggreat uncle on his father's side. Many of you probably recognize his name as an expensive bourbon, and some of you may have heard he was the inventor of bourbon -- a title he probably doesn't deserve.
But my respect for ol' Elijah has gone up a notch because my research shows he played an important role in establishing freedom of religion in this country.
Like his brothers Lewis and Joseph, Elijah was a Baptist minister when Baptist wasn't cool. Before the revolution, the Craigs lived in Virginia where Anglican was the established church. Baptist was considered a radical faith in those days. Baptists were accused of child abuse because they didn't believe in baptizing infants, and they were considered immoral if they were not married in the approved church.
Like his brothers, Elijah was thrown in jail for preaching without a license. But along the way he attracted the attention of his Orange County neighbor James Madison. Even as a young student at Princeton, Madison was appalled by the persecution of people of other faiths and wrote letters to his friend, William Bradford about it.
According to Madison's correspondence which has been preserved online, when Madison represented Orange County at the Virginia convention of delegates in May, 1776, Elijah was there too, as a representative of the association of Baptists. Elijah wasn't a voting delegate but he was an advocate for freedom of religion. In June, Madison wrote to his father that "Mr. Crig" was on the way home with a packet of information to share with Madison Sr.
The constitution of the Commonwealth of Virgina, which those delegates approved, included freedom of religion. The original wording called for "toleration" of other religions, but Madison said "toleration" wasn't enough. With Madison's input the wording was changed to "all men are equally entitled to the free exercise of religion, according to the dictates of conscience."
Years later, Virginia congressman James Madison would propose the Bill of Rights which assures freedom of religion throughout the county. Even for Baptists and other "radical" religions.
Thanks Uncle Elijah.
Posted by Sue Merrell at 10:17 PM
Wednesday, July 29, 2015
It should look about like any other full moon -- beautiful. But since it is rare, and it happens to fall on a Friday to boot, I decided to celebrate by offering my latest mystery, Full Moon Friday, free on kindle. All day July 31. Just go to Amazon, download and enjoy. Even it you don't have a kindle, you can download a free Kindle App so you can read Full Moon Friday on your phone or tablet.
Such a deal!
Now my writer friends may be wondering, what's the advantage of giving books away? Word of mouth is the best advertising you can get, and I expect the people who read this book for free are going to like it so much they will tell their friends. Many of my readers have been spreading the word. Who knows, they might like it so much they will suggest it to their book club. It's happened before. In fact a book club in Angola, Indiana, is reading Full Moon Friday right now on the suggestion of a fan. And a book club in Jenison, Mi., came to the Full Moon Friday release party last summer.
So don't miss your chance to read this fast-paced, whacko mystery.
Posted by Sue Merrell at 1:54 PM