GwendolynStrong.com

Letting Go...

vstrong@gmail.com (Victoria Strong) — Wed, 10 Mar 2010 15:30:00 +0000

Thank you all for the nice birthday wishes. Bill was sneaky and posted about it and put it on Facebook without me knowing and so I woke up surprised by all the lovely well wishes and birthday greetings all day. And it really made me feel special. I was being a bit quiet about my birthday this year (something unusual for me). I think I am just so humbled by the kindness and support so many show us on a regular basis. I feel I ask so much of people -- post this, vote for that, sign here, go to this event, donate, donate, donate... Everyone is always telling me they are glad to help, but I am a person who doesn't like to ask anything of anyone. I'm learning to adjust, however, because it takes a lot of support just to survive SMA, let alone campaign to create change. And we are so very fortunate to have such incredible support and constant help. When they say, "It takes a village..." -- I can attest to how much the help of a village can truly change the life of a child. Gwendolyn has a full, rich life because of the love and support and encouragement of so many, many people. And for that, I am forever indebted.

And I did have a great birthday. Bill and Gwendolyn treated me to a spa-cation at the luxurious Bacara resort on Saturday. Ooo-la-la! It was wonderful and I felt truly relaxed and fully pampered. In fact, during my day of pampering I had a sense of calm wash over me that I am still holding. For the first time since Gwendolyn became sick, perhaps even since she was born, I was not anxious being away from her. I was not checking my phone every 5 minutes just in case. My mind was not half in the "what if something happens" thoughts. For the first time in two years, I let it go. I felt an acceptance that I will never be in control of an uncontrollable situation. And while driving out to the Bacara I couldn't help but reflect on just how much has changed and how Bill and I have grown.

You see, Bill gave me a similar gift almost two years ago for Mother's Day, my first Mother's Day as a mommy, and I wouldn't accept it. In fact, I got mad at him for even suggesting I travel 30 minutes away from my baby. (I'm a jerk, I know and I promise I have since apologized.) At the time, it felt like he was asking me to go to the moon. We had only been home from our month-long stay at Stanford for a week. We had been through hell and back, we were suctioning Gwendolyn every 5 minutes, I couldn't pick her up without her massively choking, and I was certain I was going to lose my baby any day. To now reflect on that terrible, awful period, I realize for the first time that it seems distant. I held on to the trauma we went through all those months for a very long time -- I am still scarred by it -- but I feel like I am letting it go. And that leaves me feeling calm. It may be fleeting. I know we are only one common cold away from the life we've adjusted to and created to come crashing down. But, I will hold this feeling of peace in my heart as long as I can...and perhaps I will get to be surprised by how long it lasts.

This is a picture of the wonderful cupcakes and card

Gwendolyn and Gramma made for me today. Love them!

Happy Birthday Victoria/Mommy!!!

noreply@blogger.com (Bill) — Mon, 08 Mar 2010 16:00:00 +0000

Happy Birthday to the most incredible wife, mommy, and friend in the whole entire universe! Your endless love, dedication, strength, courage, determination, wisdom, sense of humor, honesty, and passion is truly inspiring and I am the luckiest man in the world to have found you under that T.G.I. Friday's heat lamp nearly 11 years ago :) Happy Birthday sweetheart! I love you to pieces...

***A little dated, but I just love this picture -- Hue, Vietman -- 2006 ***

Kindle For A Cause: Not A Fire Exit

vstrong@gmail.com (Victoria Strong) — Sun, 07 Mar 2010 14:30:00 +0000

We are very excited to announce a special two day benefit for the Gwendolyn Strong Foundation -- and it only costs $1.99!

Author Christopher Finlan is donating 100% of all Kindle sales of his debut novel, Not A Fire Exit, to GSF on March 7th and 8th, and will match the final total raised. That's right -- you can buy an entertaining suspense novel and raise funds for GSF at the same time!

While Not A Fire Exit has nothing to do with SMA per say, Chris was penning his mystery novel last summer when he reconnected with an old high school friend, Hillary Schmid, whose baby, Zane, had recently passed away from SMA. Chris immediately rewrote a portion of the book to include SMA as a backdrop to the story in the hopes of raising awareness of this little known disease. He then started the socially minded Milverstead Publishing to create an opportunity to raise funds for SMA as well. The novel is completely fictional and a light fun read filled with mystery and humor, and Hillary writes a compelling introduction to the book explaining the painful realities of the disease.

We are excited to be part of this project and are humbled by the kindness of Chris and Milverstead Publishing to contribute a percentage of all book sales to SMA research.

So visit Amazon today to support GSF's mission! *** You do not need an actual Kindle to purchase -- the book can be downloaded onto your computer or ipod just as easily. To download Kindle onto your PC click here.

Check out this review in Montgomery News.

Learn more about Not A Fire Exit.

Victoria Selected As Alpha Chi Omega's "Real Strong Woman"

noreply@blogger.com (Bill) — Sat, 06 Mar 2010 22:10:00 +0000

Victoria was honored and humbled to be selected as Alpha Chi Omega's March 2010 "Real Strong Woman". Check out the great feature that is currently running on the Alpha Chi Omega homepage!

Click here or on the picture below to read the feature...

Happy 29th Month Birthday

vstrong@gmail.com (Victoria Strong) — Fri, 05 Mar 2010 15:30:00 +0000

Our little princess is almost two and a half! 2 1/2!!! 2.5 years old! We celebrate each month with a special birthday song, special kisses, and lots of big hugs and yesterday, March 4th, marked the 29-month milestone! Next month she is 2 1/2 and that seems unbelievable. It feels like just yesterday we got to meet our sweet baby for the first time. Happy 29th month sweetheart. We love you.

Annual [updated] open letter to Health Net CEO, Jay M. Gellert

noreply@blogger.com (Bill) — Thu, 04 Mar 2010 15:30:00 +0000

Ahhhhhhh, the New Year! January 1 brings so many things every year -- resolutions, new beginnings, fresh starts, renewed optimism. Apparently, care of Health Net President and CEO Jay M. Gellert and his cohorts, my family can add egregious private health insurance premium increases to that list. How much? Oh, just another 35% this year or a two year increase of 82% -- yes 82%!

And get this. In one breath Health Net increases our 2010 health insurance premiums another 35% -- 82% in the past two years -- and in the other they just reported financial results and, well whad'ya know, a sweet 18% increase in adjusted net income for 2009. Lovely Mr. Gellert. Just plain lovely.

The good news is that I don't have to waste any energy on drafting another open letter to Mr. Gellert -- I can just re-post the one from last year and update a few numbers.

P.S. I'd also encourage Mr. Gellert to read my post from January 27, 2009 regarding last year's 35% premium increase and the things I don't understand about all of this. Unfortunately, they all still apply.

P.S.S. I'd also add one more ridiculous item to that list -- the vicious cycle effect: The recession, coupled with insurers like Health Net continuing to increase health insurance premiums, has resulted in policyholders dropping their coverage which, in turn, forces those insurers to spread these ever increasing costs and risk among a smaller pool of customers. And what does this lead to? Yup, you guessed it! Even further increased health insurance premiums for those that remain. It's an ugly, sad vicious cycle.

=======

February 11, 2010

Mr. Jay M. Gellert

President and Chief Executive Officer

Health Net, Inc.

21650 Oxnard Street

Woodland Hills, California 91367

Dear Mr. Gellert:

As the President and Chief Executive Officer of Health Net, I think you should be made aware of something that your company is doing and the impact it will have on the well-being of your members. My family has a Health Net PPO insurance policy. In January 2010, we received a form letter from your company informing us that our policy premiums would be increasing 35%. The letter cited our age, type of coverage, dependent status, address, and the cost of providing health care as contributing factors. It’s ironic because we received a similar letter from Health Net in January 2009 citing the same contributing factors for the same exact increase: 35%. In just two years, Health Net has increased our private health insurance premiums a whopping 82%. To me, this is unfathomably egregious and immoral.

My wife and I have a 28-month-old daughter, Gwendolyn. Gwendolyn was born perfectly healthy in October 2007, but was diagnosed with the motor neuron disease Spinal Muscular Atrophy (SMA) at 6-months. Her mind is no different from that of any other healthy baby, but her body is failing her. She is completely paralyzed and requires constant 24-hour care. Based on statistics, Gwendolyn is an outlier.

As you can imagine, our situation is extremely challenging. I don’t tell you this to ask for your sympathy, I tell you this to explain that an unexpected premium increase of this magnitude is financially catastrophic and, given the uninsurability of our family due to Gwendolyn's disease, is immoral. I’m certain that, as one of the largest health insurance providers in California, your decision to increase premiums to this extent is negatively impacting thousands of members in similar circumstances. According to a Harvard University study, more than 50% of household bankruptcies are related to medical debt and more than 75% of those had health insurance. No doubt Health Net’s decision to increase premiums at this rate will only increase this appalling statistic.

As the President and Chief Executive Officer of Health Net, I’m formally asking that you reconsider your premium increase policy for these types of situations – not only for my family, but for all families that have been impacted by life-altering medical circumstances. I understand that the economics of the health care industry are squeezing all parties involved and I realize that it may not help you make your quarterly or annual earnings estimates, but it’s the right, just, and moral thing to do.

I thank you in advance for your time and consideration and would be more than happy to speak with you if you would like more information.

Kind regards,

Bill Strong

Santa Barbara, California

strongbill@gmail.com

"Walking"

vstrong@gmail.com (Victoria Strong) — Tue, 02 Mar 2010 15:30:00 +0000

Yesterday was a first...well, at least in this form. Gwendolyn "walked." By walking I mean she was in the stander and we rolled it through the therapy unit. Simple enough for most folks, but this is the first time Gwendolyn has ever moved completely forward while standing. She has been using the stander successfully for almost a year now and although it took some adjusting, she really likes it. While in the stander, she plays with the xylophone, hits drums, looks at flash cards, plays games on her itouch and lot of other things we play when she is flat, but in an upright position -- well, it's a whole new world.

Today, she was very curious about what else was in the therapy unit. We use a private room (that has been scrubbed down) first thing Monday morning before anyone else has been in there to help minimize our germ exposure. But the door is open to see and hear the other children. Today Gwendolyn kept looking over to check out what fun was being had by the others. (She had previously never really noticed.) After seeing this cute curiosity and because Gwendolyn was tolerating being upright so well, her therapist suggested we go see the little girl on the other side of the doorway. We wheeled Gwendolyn out of the room and I realized she had never done that before -- stood, faced completely forward and moved directly toward someone. Her stroller faces us so we can see to suction her and although we hold her upright and walk her around, unless I walk backwards she is never completely forward, let alone standing. So out the door we "walked". It took three of us: the therapist guiding the stander, Bill holding the BiPAP, and me making sure her head was supported, but out we went. We said lots of hellos, waved vigorously at the little girl, visited other therapists, and kept cruising. And Gwendolyn was taking it all in -- like a sponge! She was absolutely tuckered afterward, quickly falling asleep on our short drive home.

Then a funny problem arose in the afternoon. Miss Independent demanded to be carried around, facing forward, as upright as she can be in my arms. I tried to put her on the kitchen counter so we could dance and put the dishes away together - she usually likes this. Nope. Not today. Today: "Mommy must hold me so I can really help with the dishes." She did not want to rest her head on my shoulder, thus freeing up an arm. She did not want to be in her stroller to sit up. She wanted to be up, up, up -- as straight as can be. The problem is Mom needs extra arms.

In one moment I found this hilarious. I adore my little girl's spunky attitude and certainty of what she wants. But in another I felt the weight of knowing Gwendolyn is now wanting to do things that she may not be able to do. I know we will find a way to modify things and make experiences happen for her. But sometimes a little girl just wants to put the bowls away all by herself.

New LOVE: Hide & Seek

vstrong@gmail.com (Victoria Strong) — Mon, 01 Mar 2010 15:25:00 +0000

Anyone up for a game of Hide & Seek? But, where is Gwendolyn???

Is she behind the curtains...

Is she in the closet...

Is she under the pillows...

SURPRISE!!!

Gwendolyn's newest favorite game is hide & seek. She loves the counting. She loves the whispering about where to hide. She gets so excited watching as Daddy looks for us. And she is all a-flutter when "SUPRISE" we find her!!! The easiest is when we have three people playing -- I hold her, Daddy finds us. But mid-week, when Daddy is working, Gwendolyn just HAD to play, so we found all sorts of new ways to hide -- under the pillows...behind the curtains... And when her cousins were here -- oh, wow! that was really F.U.N.!

Rare Disease Day

vstrong@gmail.com (Victoria Strong) — Sat, 27 Feb 2010 18:00:00 +0000

Tomorrow is "Rare Disease Day," the one day each February that the rare disease community comes together to raise awareness and celebrate our shared strength. NORD (National Organization for Rare Disorders -- a branch of the NIH) created this campaign to raise awareness of rare diseases as a public health issue and highlight the need to invest in rare disease research.

Did you know over 30 million people suffer from rare diseases in the US alone -- that's 1 out of every 10 people -- not so rare when you look at it like that. There are nearly 7,000 rare diseases -- 80% are genetic in origin, 75% impacting children. Rare diseases can be chronic, progressive, debilitating, disabling, and, as we know all too well, fatal with no cure.

Spinal Muscular Atrophy -- SMA-- is a rare disease just like diseases you may have heard of: ALS/Lou Gehrig's, Cystic Fibrosis, Duchenne Muscular Dystrophy, Sickle Cell, and some you may not have: PKU, BVVL, Fragile X, Niemann Pick, Krabbe Disease. SMA has the distinct pleasure of being called a "common rare" disease -- an oxymoron in my book -- "common" in that 1 in 40 people carry the gene, "rare" because both parents must be carriers and not every child they create will have the disease.

Like SMA, many families impacted by rare diseases find delays in obtaining an accurate diagnosis, often face misdiagnosis, struggle with patient services, and obtaining adequate medical care. And like SMA, research is often underfunded and rarely invested in by the big drug companies. Yet, when I begin to feel frustrated with the pace of SMA research, I remind myself that I am in a fortunate position. SMA IS being researched, shows SO much promise, and an end to this cruel disease IS plausible. It is going to take a lot more work, a lot more people, and a lot of funding, but a cure IS realistic. This is not the case for so many of the thousands of other rare diseases.

So join me in supporting Rare Disease Day. Visit the Rare Disease Day US site and click to "Raise Your Hand", visit the World Rare Disease Day site, tweet about it, Facebook about it, and let the world know that you CARE ABOUT RARE!!!

Here is a cool video created for last years World Rare Disease Day:

Final Two Days: $5,000 "Hero Next Door" Contest

vstrong@gmail.com (Victoria Strong) — Thu, 25 Feb 2010 19:00:00 +0000

Tomorrow, February 26th, is the LAST DAY to vote in the Hero Next Door contest. First, second and third place are all neck in neck, just a few votes between us. It is going to be down to the wire. And I am not throwing the towel in! I REFUSE!

Please, please take a few minutes today to help us reach first place and win $5,000 -- all of which will go toward SMA research and awareness. I know many of you have already voted and I want you to know how much it means to me to see your vote, to see the wall postings on Facebook, to see people tweeting the link and rallying for us. I can't do anything to stop SMA from ravaging my sweet baby's body. Raising money to fight for a cure is all I can do. So thank you for fighting with me!!! It truly helps.

Here are three simple, free ways that you can help the Gwendolyn Strong Foundation win $5,000 to further our mission:

VOTE -- Voting is free and simple. Go to http://bit.ly/Endsma

FORWARD -- Please forward the voting link -- http://bit.ly/Endsma -- to at least 15 people in your address book and ask that they do the same

POST -- Please post the voting link -- http://bit.ly/Endsma -- as your Facebook status, post the voting link to any Facebook groups or fan pages that you may have access to, do a blog post asking your followers to vote, tweet the voting link, etc.

Thank you again for your continued support of our cause. Together, we will end SMA!

(And a huge thank you to the awesome Gooden family for making the super cool button at the top of this post -- all while their darling daughter Nora battles RSV. Yes, the SMA community is filled with heros!!!)

Mommy & Gwendolyn

noreply@blogger.com (Bill) — Wed, 24 Feb 2010 20:13:00 +0000

Just thought this was a sweet moment -- my girls cuddling...

Nothing Better Than Family

vstrong@gmail.com (Victoria Strong) — Tue, 23 Feb 2010 15:30:00 +0000

My super sister and nephews came to visit and anyone who knows me (or reads the blog) knows I hibernate when they arrive because I don't want to miss a second of the fun of being with them. And it was oh, so, so fun! We played princesses and knights, had tea parties, went to the zoo and the park, played games, had races, talked and talked and talked, and visited the mini horses with GrandPa. Aunt Elizabeth painted nails with special butterfly decals and Gwendolyn helped paint Henry's. William told Gwendolyn stories and held her hand every morning as they watched cartoons. Gwendolyn absolutely loves being with her cousins. They are so gentle with her and so protective. They constantly wanted to snuggle or give her kisses or hold her hand or just be near each other. And it just warms my heart to see it. On one of the days they were here my friend, Katee Grace, who is an amazing photographer, met us at the park to capture the cousins together. We don't have all the images yet, but look at what Katee sent as a teaser...love, love, love them!!! They all left yesterday and I am blue, blue, blue. But, these pictures cheered me up...

Miss you and love you super big sis!!!

Chase Celebration Reception - You're Invited!

vstrong@gmail.com (Victoria Strong) — Wed, 17 Feb 2010 15:30:00 +0000

We are so, so, so excited to announce that this Saturday, February 20, JP Morgan Chase is hosting a celebratory Chase Community Giving reception at one of their Santa Barbara, California Chase branches for the Gwendolyn Strong Foundation and we would love for our wonderful supporters to attend. There will be light refreshments, short speeches, and lots of celebrating. If you are in the Santa Barbara area, stop by for a toast! And for all the incredible SMA families around the world who made this possible, we are taking you with us in spirit...this miraculous win was for all of us, all of our children, all of our angels...all of us fighting to end this cruel disease.

Thank you to everyone who believed in us and our cause and for rallying with us. We are so proud to be fighting with such remarkable people. So no matter where you are, raise your glass at 2:00pm on Saturday and toast to what we all just accomplished. And for those who can attend, we look forward to thanking you in person on Saturday. **Please email me or post a comment if you plan to attend so we can have a rough count. *** Attire is casual (sundresses, etc.)

Date ---> Saturday, February 20, 2010

Time ---> 2:00-3:30pm

Location ---> Chase Bank Branch, 1302 State Street, Santa Barbara, CA 93101

View Larger Map

See you there!

Big Girl Salon Hair Cut

vstrong@gmail.com (Victoria Strong) — Tue, 16 Feb 2010 15:30:00 +0000

This weekend we took Gwendolyn to the big girl fancy salon that Mommy and Daddy go to, Walter Claudio Salon Spa, for her official second hair cut. The whole salon idea came from how much she loves "Daddy Salon" after her bath and that she was in bad need of a hair cut coupled with my stylist, Jen, being an amazing supporter of us, GSF and a cheerleader for Gwendolyn. I thought Gwendolyn may warm up to the idea if she watched as I got my bangs trimmed. She watched and warmed compared to last time, but very luke. She liked getting to wear a gown and did well in the beginning, but that was about the extent of her love for the big girl salon. Oh well, at least Jen was quick and super sweet throughout the entire thing. Thank you Jen for being so great! Gwendolyn did like holding the little envelope with her hair in it for our walk home :)

2010 Winter Wine Fundraiser in Memory of Sweet Baby Zane, Malvern, Pennsylvania

vstrong@gmail.com (Victoria Strong) — Mon, 15 Feb 2010 16:00:00 +0000

On March 7th, Hillary and Keith Schmid are hosting yet another amazing SMA fundraiser in the Philadelphia area. Since their daughter, Zane, was diagnosed with SMA, the Schmid family have organized and campaigned and fundraised with enormous passion and drive. They lost their sweet baby Zane, who has an SMA-free twin, Avery, last summer when she was only 5 months old. And yet in the wake of unimaginable grief and while caring for Avery, they relentless continue to fight. The Schmid's continue to inspire and amaze us and we are absolutely honored that they selected the Gwendolyn Strong Foundation for their 2010 Winter Wine Fundraiser at the beautiful General Warren Inne.

The pre-Revolutionary General Warren Inne will set the stage for a fun evening of tasting wine and sampling award winning cuisine. There will also be a silent auction and live music. Tickets can be purchased in person at the General Warren Inne, by phone, or online via PayPal. There are a limited number of tickets available, so be sure to reserve yours soon.

And visit the Sweet Baby Zane website to learn more about this wonderful family.

General Warren Inne

2010 Winter Wine Fundraiser

Sunday, March 7, 2010

3:00PM to 7:00PM

$ 50.00 per person

Sample Wines and Award Winning Cuisine

in the Old World Charm of the General Warren Inne

*Live Music

*Silent Auction

Proceeds to benefit the Gwendolyn Strong Foundation

for Spinal Muscular Atrophy research

~In Memory of Zane Schmid~

General Warren Inne

Old Lancaster Rd.

Malvern, PA 19355

(610) 296-3637

www.generalwarren.com

Happy Valentine's Day!

noreply@blogger.com (Bill) — Sun, 14 Feb 2010 17:46:00 +0000

Happy Valentine's Day everyone!

Cold Spring School GSF Talent Show Benefit

vstrong@gmail.com (Victoria Strong) — Sat, 13 Feb 2010 16:00:00 +0000

As you may remember, a local elementary school, Cold Spring School, adopted the Gwendolyn Strong Foundation as their charity of the year. The student council members have already passed out petition flyers, sold Axxess books, and have a "Feed the Piggy" campaign going in which they collect coins from their classrooms to add to collective a piggy bank. The principal sent emails to every parent telling them about the Chase campaign and how to vote. And one sixth grade class wrote and illustrated the most adorable children's book for Gwendolyn (which is now one of her favorite books to read). But last Friday, we were invited to participate in one of their philanthropic and adorable events.

Every year the student council produces a school wide talent show. They handle the auditions, they organize the acts, they direct the lighting and sound -- an almost completely student-run event (with the help of a few kind parents and teachers). It started at 7:00 pm on Friday night and while we were nervous about the germ exposure, we knew Gwendolyn would really love it...and we wanted to thank the school for being so supportive. And we are so, so glad we went. Gwendolyn had an absolute blast. She was mesmerized by the singing, the dancing, the drum and piano playing...she was glued to every movement and every act. Gwendolyn absolutely LOVES children and we are so glad we had the opportunity to be part of something so sweet.

Thank you Cold Spring School and the student council for creating such a wonderful event. And thank you to the parents for contributing to our cause. The talent show raised $550 for the Gwendolyn Strong Foundation! Way to go!!!

Hager & Dowling Foundation Grant

vstrong@gmail.com (Victoria Strong) — Fri, 12 Feb 2010 15:30:00 +0000

Last December we were stunned to learn a local law firm, Hager & Dowling, was considering the Gwendolyn Strong Foundation as a recipient of one of their yearly charitable grants through the Hager & Dowling Foundation. Our dear friend and GSF board member, Daalia Reynolds, was invited to present our cause to the Hager & Dowling Foundation committee. She clearly wowed them because last week we were invited to attend a luncheon with the Foundation committee to accept our grant check for a whopping $7,000! -- their largest contribution this year! We were absolutely thrilled to be selected and honored the committee wants to fight SMA with us!

We had a wonderful time at the luncheon. Everyone was so kind and thoughtful. Gwendolyn went with us and she was as good as gold -- listening intently to Daddy's speech, waving hello and goodbye, and showing all the nice lawyers her pony. And she was very impressed with the gigantic super-sized check -- as were we!!!

Thank you so very much Hager & Dowling Foundation for this generous donation and for joining the fight to end SMA. We'd like to also specifically thank Chad and Carolyn Slack for believing in what we are doing and introducing Hager & Dowling to our cause. And we'd like to thank Daalia Reynolds for so eloquently presenting our mission to the foundation committee and being as passionate about curing this cruel disease as we are.

King Of The Hammers -- Go Uncle Richard!

noreply@blogger.com (Bill) — Thu, 11 Feb 2010 18:30:00 +0000

This is what my sister and brother-in-law do for fun :) Tomorrow, Gwendolyn's Uncle Richard will be co-piloting the GenRight Off Road "805" buggy (see pic below) in the King Of The Hammers off-road race in Johnson Valley, CA. It's referred to as "the toughest one day off-road race on the planet" and not only is he racing in this absolutely crazy thing, but he is also promoting the fight to end SMA with the Gwendolyn Strong Foundation URL -- EndSMA.org -- on his race suit.

Thanks so much for the support Uncle Richard! Now go get 'em!

Happy Birthday Gramma!

noreply@blogger.com (Bill) — Wed, 10 Feb 2010 15:30:00 +0000

Gwendolyn's Gramma is just plain awesome! She's one of the most important people in Gwendolyn's entire world and has been a constant, positive role model throughout Gwendolyn's life and, well, mine, too. She's one of my best friends and I consider myself extremely fortunate to have been blessed with her influence and guidance in my life and that she is now such an important part of Gwendolyn's.

Gwendolyn's Gramma is a bright shining star in her life. I never doubted that she would be, but watching her on a regular basis with Gwendolyn just makes me happy. She is thoughtful and selfless and warm and dedicated and creative and encouraging and fun and accepting and active and quirky and grandmotherly and just plain loving with Gwendolyn -- all the things that she has always been to me.

A life-altering diagnosis like SMA can rock family and friends and communities to their core and turns entire worlds upside down, but it's how those individuals and groups come together to support and respond and rally around one another that truly makes a marked difference in the quality of life for Gwendolyn, for us, and -- I think -- for themselves. Like many people in our lives, my mom has no doubt been devastated by Gwendolyn's SMA diagnosis, but it's the way that she has responded and has selflessly been there for Gwendolyn and for us in every single imaginable and unimaginable way through each step of this journey that is remarkable and truly special.

She has been driving up to Santa Barbara from Los Angeles -- 150 miles round trip -- every single Tuesday for two years (and she has never missed a week) to spend time with Gwendolyn, always bringing a home cooked meal (and a bottle of wine) and eagerly doing our laundry or helping us with other chores around the house. And each week she comes up with new creative crafts to do with Gwendolyn and games they can play together and ways to adapt toys so that Gwendolyn can be part of the fun. Her ideas never cease to amaze me. She has literally thrown herself into relentlessly raising awareness of SMA and fundraising for a cure with such events as May Day SMA Sidewalk Sale (GSF's first fundraiser which raised $2,500+) and Golf For A Cure (30 tee sponsors, 80 golfers, raised $6,000+ for GSF). The list goes on and on and there is nothing that Gwendolyn's Gramma wouldn't do for her or for us -- to make Gwendolyn's life as amazing as possible and to make ours a little bit easier in the process.

Gramma/Mom, Happy Birthday! You are the greatest in the whole wide world and we love you to pieces! We hope you have a wonderful day!

Gwendolyn (1 day old) with her Gramma

Gwendolyn (4 months old) with Gramma

Gwendolyn snuggling with Gramma

On the swings with Gramma at the universally accessible park Shane's Inspiration

Practicing the powerchair with Gramma

Gwendolyn waiting anxiously for Gramma today (yup, that outfit is a Gramma gift)

Gramma's creative project of the day today -- Valentine's!!!

Gramma's Birthday cupcake -- Happy Birthday Gramma!

Special Buddies

vstrong@gmail.com (Victoria Strong) — Tue, 09 Feb 2010 21:00:00 +0000

Gwendolyn loves her friends. She just loves them. When I say their different names, she immediately lights up and gets so excited about going to see them. And although she usually watches from her stroller or from the couch as they play (toddlers are pretty busy), I can tell she still feels included. She listens to every squeal, every laugh, every shout. She looks at me with concern when one of them cries over a toy. And she is in absolute heaven when they come up to her, bring her a toy, want to see what she has. It simply warms my soul to see the innocent interactions between Gwendolyn and her friends. And on Friday my soul was on fire. Our sweet little friend Bella was determined to bring a book to share with Gwendolyn. So Marina, Bella's Mommy, popped the book in her bag, but assumed her usually very busy little girl would forget. Well, as soon as we arrived, Bella started saying, "Yeah, Gwendolyn. Show you my book. Mommy get book. Show Gwendolyn..." She then cuddled up with Gwendolyn and very patiently held Pat The Bunny so Gwendolyn could see each page. They sniffed the flowers. They felt the scratchy Daddy face. And they pat the soft bunny fur together. And they both had so much fun!!!

My 2 Cents On Study: Screening For Spinal Muscular Atrophy (SMA) Not Cost-Effective

noreply@blogger.com (Bill) — Tue, 09 Feb 2010 16:00:00 +0000

The results of a study has apparently "concluded" that pre-screening for Spinal Muscular Atrophy (SMA) is not cost-effective and its "findings" were presented Friday at the annual meeting of the Society for Maternal-Fetal Medicine in Chicago. The study, based on its statistical assumptions, estimates 11,000 women would have to be screened to prevent one case of SMA, at a cost of $4.7 million per case averted. That is definitely a staggering financial burden to only save one baby -- one human life -- from the cruel grasp of a terminal and preventable disease.

This study really irks me, at my core. Statistics are funny little things. They can be extremely useful. They can definitely be extremely helpful. They are no doubt extremely subjective. And, in my opinion, as in cases such as this...they can be extremely dangerous.

As with any study and statistical model, the researchers made many assumptions and I'd challenge almost ALL of those used in this study. A few issues with the study's assumptions:

Prevalence --> They assume 1 in 10,000. Estimates are widely quoted between 1 in 6,000-10,000. They used the high end. That's up to a 40% difference.
Carrier rate --> They assume 1 in 50. A Genzyme study published in July 2009, put the carrier rate range between 1 in 25 and 1 in 50. They used the high end. That's up to a 50% difference.
Carrier screening sensitivity rate --> They assume 90%. Tests are as high as 98%.
Carrier screening cost --> They use $400. The actual cost of performing the test in the lab is $30. That's a 93% difference.
Lifetime cost of a child with severe disease --> They use $260,000. I don't even know where to begin on this one. Let's just say that it's low, WAY low. And that cost is only increasing as SMA children live longer as a result of better access to information and care options. A more accurate number based on 2 years of living with SMA -- $750,000 to $1.5 Million. And that doesn't include a penny of non-insurance out-of-pocket costs to care for SMA children which can run between $20,000-$50,000 per year.
Maternal quality-adjusted-life-years --> They used 22% for Type I and 8% for fetal loss. The mere suggestion that “quality of life” could be deduced down to a single number or percentage with any semblance of remote accuracy for any study is unfathomable and disgusting. I would suggest they actually spend a day in the shoes of a family battling SMA Type I and see if they still think a percentage can adequately encompass “quality of life” adjustments for the diagnosed, family, friends, and community.

But, rather than go tit-for-tat on every arguable number and percentage, I'd prefer to focus on one:

Carrier screening cost assumption --> $400.

SMA may not be a treatable disease, but it IS preventable. There is a simple blood test, similar to the test routinely performed for cystic fibrosis, that can be given to prospective parents to test for the SMA gene -- and it can be done BEFORE pregnancy. It's extremely simple and very accurate. The problem is the price tag. The retail price for this SMA carrier test is currently between $250-$800. Why so high? Well, that's a long, complicated saga with roots in patent law and ownership rights of the SMA gene and we're not going to go down that path this time (click here to read a previous post about that topic). A very interesting tidbit though -- the actual cost of performing the SMA carrier test in the lab is approximately $30. Yes, $30! Stay with me here...

If we assume the SMA pre-screening test was $30 -- the actual cost of performing the test in the lab -- instead of $400, as the study estimates, the "cost per case averted" goes from $4.7 million to $352,500 -- pretty darn close to the arguably-much-too-low-based-on-my-own-personal-experience $260,000 lifetime cost of a child with SMA estimate the study used -- it would alter the study entirely!!!

See, statistics can be funny things. But the truly tragic and unfortunate part of studies like these is that we, as a society, have deduced human life down to averages, assumptions, and cost-effectiveness. I understand that, at some level, we have to. But, in my opinion this is downright immoral as their results are blindly relied upon in making sweeping policy decisions that have material and drastic impacts on real people's lives.

Perhaps my statistical-funny-math is a much too simplistic way to look at things, but I'd pose a simple non-statistical question to those involved in studies such as these:

Question --> Rather than being so diligent about deriving complex, overly subjective statistical analyses to prove why we SHOULDN'T be SAVING LIVES, why don't we spend that energy focusing on why we SHOULD and how we COULD -- especially when these diseases CAN be easily prevented?

Click HERE or on the image below to read the brief release of the study...

Vote to Help GSF win $5,000

vstrong@gmail.com (Victoria Strong) — Sun, 07 Feb 2010 16:00:00 +0000

I'm no hero. No more so than any parent fighting for their child. But, if I win the "Hero Next Door" contest, that means $5,000 more for SMA research and awareness. And so, I am asking for your vote once again.

Care2 -- the company who hosts our PetitionToCureSMA.com, who has been incredibly supportive of our cause, and who we simply love -- has teamed up with Tom's of Maine to create the Hero Next Door contest -- every day people doing more. We were nominated, along with dozens of others, and here is the neat thing -- we made it to the top 10 finalists! Now this is where you come in...

Here is the breakdown:

Voting ends February 26th.
You can only vote ONCE.
The person with the most votes wins $2,500 for their charity and $2,500 for themselves -- which, in my case, would obviously go directly to research and awareness because there is nothing more important! So that's $5,000 for SMA -- all with a simple vote.
Technically only one person can win and so "Victoria" is the name you see, but the nomination is clearly for all of us -- including Gwendolyn.

How to vote:

Go to: Hero Next Door
Click on Vote for Victoria. (It is the green button at the bottom of the page.)
Fill out the form (name, birthday, email and zip code).
Click on the animal picture (to help stop spammers).
And then hit "Vote" and that is it.
You will see a big "Thanks for voting for Victoria Strong" to let you know your vote went through.
Since you can only vote once, help spread the word by also using the "Tell a Friend" features on Facebook, email and Twitter by clicking on the icons on the right.

And again, all $5,000 will go to the Gwendolyn Strong Foundation to support SMA research and awareness! Thanks for once again supporting us and getting your voting skills out! We are all becoming pros :)

Unite For The Cure Raises $145,000+ For Dr. Keirstead, Accelerates Promising Stem Cell Program

noreply@blogger.com (Bill) — Sat, 06 Feb 2010 16:39:00 +0000

In only four months and with fundraisers organized by over twenty families and their friends across the globe (literally), "Unite For The Cure" (Unite) met and surpassed their goal of raising $100,000 for Dr. Keirstead's promising SMA research. In fact, over $145,000 -- yes, one-hundred-forty-five-thousand-dollars -- was donated to Families of SMA (FSMA) through Unite efforts earmarked specifically to accelerate Dr. Keirstead's stem cell research to human clinical trial. This is an enormous accomplishment in and of itself in such a short period of time, but when you take into account that every single one of these remarkable families is either caring for a terminally ill child or grieving the loss of their precious baby -- it is nothing short of miraculous!

Each of these inspiring Unite families has poured their heart and soul into fundraising, has shown tenacity and dedication, has asked friends and family to be involved, and has campaigned tirelessly to get Dr. Keirstead the money he needs. In November 2009, Dr. Keirstead's SMA stem cell program was named by Esquire magazine as a "Project That Will Change Science Forever". We truly hope that this will prove to be the case and that each of us will have had a material impact on accelerating this groundbreaking, game changing science into the history books.

A message from Kenneth Hobby, President, Families of SMA:

Thank you all for the tireless efforts involved here to support this program and our mission to develop a cure. Thanks to you we will be one step closer.

Reaching $100,000 raised is a tremendous milestone to be able to hit. I think we all have that additional bit of extra hope now in the community with the funds you have all raised to help move us forward.

The initial investment from Families of SMA in stem cell research was in 2000 and this funded efficacy studies using motor neurons from mouse stem cells. Over the following years additional funding lead to the first, highly-pure therapeutic population of human motor neurons for cellular replacement therapy for SMA. Click here for full details on the program.

The team involved in this collaboration includes the laboratory of Dr. Keirstead at The University of California, Irvine, the laboratory of Dr. Kerr at Johns Hopkins University, California Stem Cell, Inc., and FSMA.

In October of this year we completed a pre-Investigational New Drug (IND) Meeting with the FDA. Click here for details of this recent meeting. This meeting gave us guidance from the FDA on the clinical and regulatory pathway and requirements for submission of an IND application to be able to initiate human clinical trials.

The stage of the program we are now beginning, and the work and studies that all of your efforts are helping to support, is the preparation of the final IND application. This involves a lot of regulatory work and applications, and several experiments and tests showing that manufacturing of the motor neurons to be used in the clinical trials is reliable and scalable. The final IND application that is given to the FDA is meant to comprise all of the information that has been generated for the program to date. This can easily run into many thousands of pages in length. This application is submitted to the FDA, which then has 30 days to review the information and then give a final say on whether we are clear to start the first clinical trial.

At this final stage just before clinical trials nothing is yet guaranteed. Programs can and often do get put on hold by the FDA at this stage. This particular program looks to not only be the first new IND application put into the FDA for SMA, but also one of the first for a stem cell therapy for any disease! So, the unknowns and risks are still high, but so are our hopes that we will be successful in getting approval and then move forward into clinical trials with patients.

Thank you all so much for all the amazing energy you have put in to support this program and to help all in the community.

Very best,

Kenneth Hobby, President
Families of SMA

And a message from Dr. Hans Keirstead:

I am excited to let you know that we have finished all of the animal work that is required by the FDA, covering both efficacy and safety. We are currently writing up all of the results in a manner that the FDA requires for submission of an IND. We are also completing work to document the cell preparation and shipping procedures, and conducting experiments to ensure that those procedures do not adversely affect the cells. Lastly, we are preparing the IND.

FSMA, and many families, have generously contributed to the funding of many of our research needs. However, many non-research tasks must be preformed before we can submit our IND. These studies include the cell preparation and shipping procedures mentioned above, and the IND ‘paperwork’ preparation costs.

Thank you so very much Unite families for all of your support. We simply could not have done this without you, and your ongoing support is nothing short of enabling this research to move forward into the clinic.

Hans S. Keirstead, Ph.D.
University of California, Irvine - Reeve-Irvine Research Center
Sue and Bill Gross Stem Cell Research Center

At this point, we can all know and be proud of the fact that, as one united community, we've helped accelerate this program. We now simply have to wait for the IND process to play itself out, the science to prove itself in humans, and -- hopefully -- pave the way for getting this treatment to children as safely and efficiently as possible.

From the bottom of our hearts, thank you Unite families. It has been an incredibly inspiring experience working with you and we hope that each of you found it to be motivating and uplifting. This has been a wonderfully successful campaign and we are so proud of every single effort that has helped make this such a huge success -- a $145,000+ collective success!

As we intended Unite to be a one-off campaign, we will be closing Unite down (although the Unite site will live on in perpetuity in its current form). However, we believe this type of earmarked, directed fundraising serves an enormous benefit to both fundraisers and researchers and in the coming months we plan to launch a similar program. After all, it is your money -- you should decide where it goes. If you are interested in joining this effort, please contact us or stay tuned for the big launch in the coming months. Together we will see SMA cured!

The McClay Family Raised over $16,700!

The Span Family Raised over $10,700!

The Potter/Reilly Families Raised over $10,000!

The Schmid Family Raised over $9,500!

The Marshall Family Raised $9,000!

The Strong Family Raised over $8,300!

The Gooden Family Raised over $7,700!

The Pringle Family Raised over $7,700!

The Butler/Trakas Families Raised over $6,900!

The Gustafson Family Raised over $6,700!

The Lunt Family Raised over $6,600!

The Lucas Family Raised over $6,000!

The Zahn Family Raised $6,000!

The Coleman Family Raised over $5,200!

The Wright-Beasley Family Raised over $5,000!

The Ragland Family Raised over $5000!

The Howell Family Raised $5,000!

The Calafiore Family Raised over $4,500!

The Felix Family Raised over $4,000!

The Greene Family Raised over $1,400!

The Lovelace Family Raised nearly $1,000!

An additional $2,000 was raised in private donations sent directly to Unite from individuals, ranging from $25.00 to $500.

What An Amazing Success!

Thank you!

Watching Gwendolyn

vstrong@gmail.com (Victoria Strong) — Fri, 05 Feb 2010 21:33:00 +0000

We are a little concerned about Gwendolyn. We have been watching her closely for several weeks. Nothing major is happening, but whenever we notice any subtle changes our worry-meter goes off. She is not tolerating being off bipap for long, has been waking up crying in the night, and has had some tummy troubles...and there is just something not quite right. Her oxygen and heart rate levels are all fine though. My theory is that part of the lack of energy and tummy issues have to do with the manufacturer changing her formula slightly. In a healthy child, they probably wouldn't even notice because the ingredient changes are so slight. But for a child who has absolutely no variety in her diet, even just an increase in sugar can impact her ability to digest the food as well. And if children with SMA are using their energy to digest food, then they don't have energy to breathe. As the weeks have gone on, her tummy troubles seem to be resolving, so I think that played some part in what is going on. But, yesterday she woke up with very low energy and her eyes were all red. We took her to see her pediatrician just to be safe and the good news is she sounds really clear and there is nothing of enormous concern...but she is still a bit off. We aren't overly alarmed, but are just keeping a very close eye on Miss Munchkin!!! And just to throw us off completely -- Gwendolyn has also been having fits of the giggles over these last few weeks. It is so darn cute! It is amazing how laughter eases worry. More giggles please Gwendolyn :)

Rainy day movie watching