$5M Chase Community Giving: Use Your Votes To Support SMA Organizations

Are you a Facebook user? If so, Chase is giving away $5 million to over 100 charities and YOU can determine which charities receive grants with your votes through Facebook. We're asking you to consider helping SMA focused organizations with your votes - you have 20 votes to spread around:

• Gwendolyn Strong Foundation
• FightSMA (under Andrews Buddies Corporation)
• SMA Support, Inc.
• Families of SMA

Dot Joy Salon Raffle

We are very excited to announce Dot Joy Salon in Sherman Oaks, California is hosting a raffle with amazing high end prizes and all proceeds go to the Gwendolyn Strong Foundation. Tickets are $20 each and you can enter as many times as you'd like. You do not need to attend the event to win (although the evening sounds super fun with music, cocktails, and art exhibit).

Here is a list of the awesome prizes:

4 Brazilian Blowouts ($300 valued each)
3 Customized Facials ($100 valued each)
1 Basket Smashbox Make Up ($350 value)
Eye Lash Extensions ($200 value)
Botox ($300value)
Manicure Pedicure ($70 value)
2 Brazilian Blowout Gift Bags ($120 value)
Plus a few more SURPRISES!


When:
Wednesday, December 2 at 8:00 pm
You do not need to attend event to enter the raffle!

Where:
Dot Joy Hair Studio, part of Sola Salon Studios

15125 Ventura Blvd. #101, Salon #8
Sherman Oaks, CA 91403

RSVP or to buy your raffle tickets:
323.810.9270 or email: dotjoyhair@gmail.com

We will not attend, but Gwendolyn's Gramma will be there and I am definitely entering to win -- a fun salon day in LA sounds so glamorous! A huge thanks to Heidi for including GSF in her grand opening event!!!

Golf For A Cure Tournament a HUGE Success!!

On November 20, 2009, Gwendolyn's amazing Gramma (Bill's mom) and our dear friends, Jeff and Kris Hanson, hosted the First Annual Golf For A Cure tournament at Sterling Hills Golf Club in Camarillo, California to benefit the Gwendolyn Strong Foundation. The tournament was a ton of fun on an absolutely beautiful day and was a huge success raising over $6,000 for SMA research. All of the proceeds from this event are going directly to our Unite For The Cure campaign for a groundbreaking research program at UC Irvine.

Here's what Gwendolyn's Gramma had to say about the day:

The Golf For A Cure tournament was more than I could have ever expected. Hoping to get 18 tee sponsors -- we got 30! Hoping to get 40 golfers -- we got 80! And we had such a good time that day from start to finish. It was truly an uplifting and exhilarating day. Not only did we raise awareness of SMA but we exceeded our fundraising goal as well. It is a wonderful feeling knowing we accomplished so much through one simple event, Golf For A Cure!

This tournament was nothing short of a huge, wonderful success. Gramma, Jeff, and Kris conceptualized, organized, and executed this ENTIRE event in two months -- TWO months! This is truly remarkable and we are nothing short of honored and humbled by the overwhelming amount of support from everyone who participated.

We'd like to sincerely thank each and every one of the 80 golfers and 30 diners for coming out and supporting our family, the Gwendolyn Strong Foundation, and our passionate crusade to help cure SMA. We'd also like to thank the 30 tee-sponsors and the prize sponsors for their generosity and support. And none of this would have been possible without the creativity, dedication, and tenacity of Gwendolyn's Gramma and the support and hard work of our dear friends Jeff and Kris Hanson. Thank you to each and every one of you for all that you did to make this event such a huge success!

Can't wait to see you all next year!

Happy Thanksgiving

This Thanksgiving I feel especially thankful. Not in the "Let's pause for a moment to be thankful" way. I have been feeling so aware for weeks of all that we have in our life, all that is good and all that we have to be thankful for.

1. I am thankful for the friends and family in our life who support and love us, make us laugh, care for us -- and in doing so, keep us going.
2. I am thankful for the nurses and therapists who have become such an important part of our life, who support us, give us knowledge, and who have a deep affection for and a vested interest in the quality of life of our little girl.
3. I am thankful for the doctors who care for Gwendolyn with sensitivity and warmth and who look to us as an integral part of the team -- Team Gwendolyn.
4. I am thankful for the people we have met in this process, the other fighter parents who work tirelessly to raise awareness, to increase funds, to change the future -- because if we don't, who will?
5. I am thankful for the strangers who care, care enough to learn, care enough to spread the word, care enough to help, care enough to bless us with such incredible kindness -- strangers who have become friends because they chose not to look away.
6. I am thankful for the most incredible partner, friend, husband; I am thankful for his unwavering love, his honesty, his ability to just "get it" and his integrity in fighting for not only our daughter, but for what is right.
7. And I am thankful for my Gwendolyn, my sweet, darling, beautiful Gwendolyn, for her patience, for her resilience, for her love of adventure, and for her unending zest for life.

Happy Thanksgiving everyone. Thank you for being part of our life.

Mike Paskin, you ARE an Ironman!

This weekend, we drove out to Tempe, Arizona to cheer on our friend, Mike Paskin, in the Ironman Arizona. We have no previous experience with the Ironman or triathlons or any competition of this sort, so this was all brand new to us. After this weekend, I can tell you one thing for sure -- this is one of those experiences where words and even pictures cannot possibly begin to describe the event, the emotion, the support, the enthusiasm, the motivation, and the pure inspiration, camaraderie, drive, respect, and determination of these extraordinary athletes. Quite simply, this weekend was an unbelievable experience and something that we will never, ever forget.

We are so proud of Mike and inspired by his dedication to training for, competing in, and finishing the Ironman. We are also humbled by his complete selflessness in turning his Ironman training into an SMA awareness and fundraising campaign for the Gwendolyn Strong Foundation through his TriathlonForACure.com. And, we are truly honored that we could be a part of it all. Mike Paskin, you ARE an Ironman!

The Ironman is one of the most, if not THE most, ambitious athletic tests in the world. It consists of a 2.4 mile swim, followed by a 112 mile bike ride, followed by a 26.2 mile run. Yes, you read that correctly. That's over 140 miles of swimming, biking, and running -- back-to-back-to-back-to-back! Think of this, between the time Mike started and finished the Ironman I had gone to Starbucks three times, had three meals, taken a nap, and enjoyed a glass of wine. Watching from the sidelines you could tell that it was a grueling test of endurance and I can tell you that Mike literally blew doors on this little test called the Ironman.

He's extremely modest and would never boast about it, but he finished in a total of 12 hours, 48 minutes, and 30 seconds and placed 153rd in his division -- way faster than any time estimate he ever mentioned to me. He finished the 2.4 mile swim in 1:29:06, the 112 mile bike in 6:24:09, and the 26.2 mile run in 4:31:56. Truly remarkable.

Mike, we are so proud of you and all that you have accomplished. Thank you for letting us be a part of it!

6:45am - 2,500+ athletes make their way to the swim starting line...

6:55am - 2,500+ athletes ready to go! You can literally feel the emotion in the crowd. I can't begin to imagine what it feels like to be an athlete treading water in the lake, reflecting on all that has gone into training for this one day, and waiting for that cannon to go off...

7:00am - BOOM! The cannon goes off and the 2,500+ athletes are off on the first portion of their Ironman, a 2.4 mile swim. Looks kind of like a washing machine :)

"Team Paskin" with signs in hand and cheers ready to catch Mike on one of his bike laps. We were able to see him a few times on the bike portion and he looked unbelievably calm and focused...

Case in point. Mike heading towards the transition from bike to the 26.2 mile run. Does this look like a guy who has just swam 2.4 miles and rode 112 miles on a bike?

The girls! Hanging out at the finish line, anxiously awaiting Mike's sprint to the end (literally)...

Mike had just crossed the finish line. We are so proud of you!

"Team Paskin"

PetitionToCureSMA.com Efforts Working

It is working! With collective efforts, PetitionToCureSMA.com is growing -- and quickly. In less than a week it has blown past 77,000 supporters! This is awesome! And, as this petition grows it is not only sending a strong message to Congress, it is raising awareness of SMA. And knowledge brings change!

So, keep emailing the link, posting it to your facebook, and tweeting about it -- it is working! Keep bugging your friends to take 30 seconds to sign, keep passing out flyers, keep telling everyone you know -- it is working! Keep asking bloggers to blog about it, keep asking friends to ask friends to support it, and keep asking for help in spreading the word -- it is working! Each individual effort is making an enormous collective difference in this amazing movement to change the future of SMA. Anyone, anywhere can help and you are!!!

And look what our awesome friend, Rebecca, at Care2 created and sent to all 75,000 signers -- pass it around! (Click on image twice to enlarge.)

Joe Barnick, thanks for the inspiration!

This is such a small, small, tiny world in so many ways. Victoria and I have been researching and thinking through ways to use technology to help Gwendolyn communicate. There is a really cool application that we've been looking at, Proloquo2Go, that brings augmentative and alternative communication (AAC) to the iPhone/iTouch devices. It looks like it could potentially help Gwendolyn. I emailed support at AssistiveWare, the company that created the application, to ask a few questions and I received a very thorough response from a gentleman named Joe Barnick. It turns out that not only is Joe a very helpful customer support person at AssistiveWare, but Joe also has SMA. He is also the designer and editor-in-chief of the AssistiveWare Newsletter. He was very helpful and he sent me the YouTube video below that shows how he uses his Mac and an AssistiveWare application called KeyStrokes for "all the things he cannot do in the real world". I feel so fortunate to have met Joe -- for so many reasons. He's an inspiration to me and he reminds me to never underestimate Gwendolyn's abilities and -- in his words -- to "never stop fighting for your daughter and never give up hope! :-)". Joe, I can promise you that I never, ever, ever will!

I'm so glad that I met you Joe. Thank you for opening up my mind even more to what is possible and I look forward to keeping in touch! Keep up the great work at AssistiveWare...

Date Night

Bill and I had a first -- and this is a big one -- we got a babysitter and went on a date without Gwendolyn!

This is only the second time in Gwendolyn's entire life that we have left her with someone. The first time was when she was just four-months-old and stayed with Gramma while Bill and I went to a restaurant for Valentine's Day. But that was before her SMA diagnosis. That was before we had to start saving her life on a semi-regular basis. That was before terminal illness became the framework of our life with Gwendolyn. After Gwendolyn was diagnosed with SMA, Bill and I decided that we were not going to do anything we may regret or were not fully comfortable with -- in the heartache of SMA there is simply no room to add the burden of guilt about our choices. So, that meant changing our entire lives -- changing work, changing ambition, changing priorities, changing the way we connect as a couple. We have missed fun nights out on the town, but our little girl is more important.

But, Gwendolyn has been so stable lately and sleeps really well at night and so when we received the invitation from our dear friends, the Paskins, to join them for a "Friends-giving" dinner at their house, we knew that we were ready. We are enormously thankful to our friend (who is a pediatric nurse) for being the ultimate overqualified babysitter. Having her with Gwendolyn made us extra comfortable that IF there was an emergency, Gwendolyn would be in good hands.

And -- drum roll - it all went perfectly. Gwendolyn slept the entire time we were gone. We left feeling relaxed and good about our decision. We had a wonderful time chatting with friends, meeting new people, and sharing a Thanksgiving dinner with people we are so thankful for. Look out Santa Barbara, Bill and Victoria are letting loose :)

Dr. Keirstead's Research Named "Project That Will Change Science Forever!"

Dr. Hans Keirstead's research was just featured in Esquire magazine as one of 2009's "Six Radical Projects That Will Change Science Forever". This is the groundbreaking research that we wholeheartedly support. Dr. Keirstead and his team are our hope to cure SMA and this is why we started Unite For The Cure. But this research is so much bigger than our family and even SMA. Yes, this little known disease called SMA may be the start of a scientific revolution. Donate and be part of it!

Click on the image below or click here to read the article on Esquire.com.

I Support SMA Research Because Babies Matter!

Okay guys, we need help! And NOW! The SMA Treatment Acceleration Act has a window of opportunity in the House of Representatives now that the ginormous health reform bill is no longer at the forefront. But, it is a small window and so we need to up the ante, spread the word, get our mojo rolling again!!! PetitionToCureSMA.com is helping. It has given the SMA community backing to present to Congress. It has given a little known disease proof that a broader audience cares. The number of signatures on it makes a difference. So please, please ask every single person in your family, your friends, your coworkers to sign, post on facebook, tweet about it, pass out flyers, beg, plead, and SIGN. (It does not help to have you sign multiple times -- we need 100,000 unique signers.) With multiplied efforts, we can show Congress that SMA research matters because babies do!

PetitionToCureSMA.com -- 100,000 signatures HERE WE COME!!!

And THANK YOU!!!

To help your efforts, feel free to use the below or create your own ideas and be sure to comment about what you have done to spread the word!

Video: To post on your blog grab the "Embed" code on YouTube or here is the url for email: http://www.youtube.com/watch?v=DncMkpqn_xo



Flyer: Click image to download and print. It is a half sheet flyer, so cut and pass out!

A Day of Fun

Firstly, thank you all for your comments, emails, and facebook messages on my previous post. It helps to feel heard, it helps to feel supported, it helps to just get it all out sometimes. So thank you for letting me know you care -- it truly helps. As this seems to go, I felt much better later that day, snuggled Gwendolyn and hit the reset button so I could just focus on her. And after a good cry with Bill and then a good nights rest, on Saturday I woke up renewed -- which was fantastic because we had a wonderful, fun day!

To begin the day, we headed to Samantha's birthday party -- a Yo Gaba Gaba themed shin-dig. Samantha's fabulous parents really went to town with darling decorations and a giant bounce house. I squished through the tiny opening meant for two-year-olds, but Gwendolyn had an opportunity to bounce and so I was determined. She wasn't so sure about it, but was really keen to watch Samantha gleefully jump up and down. We had a great time hanging out with friends and watching little Samantha enjoy her special party.


After the party, we spur of the moment decided to head out to the wine country for a picnic. We knew Gwendolyn would sleep through the drive and then we could visit the mini horses when she woke up. We lucked out again and got to see the fabulous Maria at Quicksilver Ranch. Maria let Gwendolyn meet two new minis: Tipper and Raw Hide. Gwendolyn LOVED them!


And then on Saturday night, after Gwendolyn was sound asleep, I left Bill at home to meet my two awesome girl friends, Terri and Daalia for dinner. We had such a fun time gabbing away about every possible topic under the sun that we suddenly realized it was nearly midnight! I haven't had a night like that in such a long time and it was so fun!!! We were too busy chatting and forgot to take a picture -- we all looked super cute, too -- oh well. :)

Grief

I don't know why, but I woke up filled with grief today. Nothing happened. Gwendolyn is fine. But some days it is just hard not to feel the heaviness of grief...not to feel overwhelmed with sadness. No matter how many we have met, I've never become used to meeting another sweet family newly impacted by SMA -- knowing what they will face. No matter how many funerals I've witnessed, I've never become used to hearing another darling baby lost their fight to SMA. And while I try to only see Gwendolyn's smiles, I've never become used to watching my baby degenerate.

Yet, on days like today, the days that are the hardest, most painful days, the days of worry and fear, the days I am forced to see my daughter's abilities decline, the days I feel tortured with the knowledge that the disease is progressing and will eventually leave me without her, childless -- on those days, I know my heavy heart is nothing compared to what I will face when I no longer have Gwendolyn. Right now I can fear the hypothetical -- and believe me it is beyond painful. But, I know it is a fraction of the emptiness I will feel when the loss of Gwendolyn is a reality. And I am petrified. I often attempt to avoid it, but Gwendolyn has a TERMINAL illness and as much as I try, that ugly reality always looms somewhere. My heart broke on the day of Gwendolyn's SMA diagnosis, but with each smile, each funny thing she does, Gwendolyn helps to heal it. When I lose her there will be a chasm in my heart so large it will never fully heal -- never. And I know that somehow I will have to learn to live with a fraction of myself. And I'm not sure how to do that.

Below I have posted one of the most honest, poignant pieces I have ever read about grief. It was written by an SMA mother, Monica English, who lost her daughter to SMA.

What I Have Learned About Grief

What I have learned about grief is that I knew nothing of grief before I was thrust into it.

What I have learned about grief is that experiencing the loss of a child through other parents gave me no real insight into what I feel now.

What I have learned of grief is that it is inconsistent - some moments/hours/days I am fine - really! But some moments/hours/days I feel as if someone is sitting in the middle of my chest making it impossible to breathe.

What I have learned about grief is that it doesn't make it impossible to function in some arenas - I go to work, go out with my husband, go grocery shopping as well as I always have.

What I have learned about grief is that it does make it impossible to function in other arenas, going to church was unbearably difficult, attending a family dinner was almost impossible, and the thought of attending a family reunion has turned me into a scared little child.

What I have learned about grief is that it hits often without warning or any provocation.

What I have learned about grief is that "milestones" are so difficult to cross not because I am remembering "one week ago" or "two weeks ago" but because every milestone seems to make her more dead.

What I have learned about grief is that family pictures both soothe and hurt my heart. I appreciate and treasure those pictures with all of us together, but I also know when I look, that every person in that picture will change but that child.

What I have learned about grief is that it freezes that person in time. My child will never be older than four, for me she will always be a little girl who loves Wizard of Oz and princesses and wears size 6 dresses. Even when my other children have babies of their own she will be four years old.

What I have learned about grief is that it is impossible not to replay my actions that day over and over again.

What I have learned about grief is that it is also impossible not to take the responsibility for her death on my shoulders - even if that isn't logical.

What I have learned about grief is that the things I thought would be difficult, like giving medical equipment and wheelchairs away, explaining death to the other children, or explaining to someone who was unaware of her death isn't and things that I would have thought would be easy, like washing her clothes for the last time, going to the movies with just three kids, or sleeping without her sounds in the the next room almost crush me.

What I have learned about grief is that it makes everything bigger than they were before she died. My kitchen table is bigger, my van has more seats, my living room has so much more space, my house is enormous.

What I have learned about grief is that it gives so much unwanted empty time. I have no therapies to do, no insurance companies to fight, no wheelchairs to lug around, no therapists to meet with.

What I have learned about grief is that it makes me question my dearest friendships. After all, if our connection was our children with their specific diagnosis and my child is gone, where does that leave us?

What I have learned about grief is that it makes insincerity such a slap in the face.

What I have learned about grief is that I don't want to answer "How are you doing?" to people who expect that every day I'm doing better - I'm not. Every day I am the mother of a dead child, that will never get better.

What I have learned about grief is that it makes the love I have for that sweet child poignantly, achingly, beautiful.

What I have learned about grief is that it colors every activity of every moment of every day.

What I have learned about grief is that the hardest situation in which to grieve, is among those who don't know grief.

My child has been gone two weeks and two days. Tomorrow will be two weeks and three days, and then two weeks and four days, and then two weeks and five days. There is nothing new. It used to be when I would joy or sorrow over something in her life I could call someone and say "Let me tell you about my daughter." If I experienced sadness during her life there was always a reason to share, to discuss. Now there is nothing new. How many times can you say, "My child died, and my heart hurts." It gets monotonous, even to me. But the pain is so big, so very, very big and always for the very same reason. My sweet little girl is dead, that will never change. I will never hold her again, I will never look into her eyes again, I will never take another picture of her, or hear her say "Mom" again. My son will grow up with no memories of his sister. My own memories of her will fade, I'm clinging as tightly as I can, but realistically they will fade.

Sooner or later I'm expected to move forward, but how do I do that without leaving her behind?

--Monica English, August 2004
Mother to Taleah English 7/24/00 - 7/22/04

Power Chair Practice

Gwendolyn likes to move it, move it! She LOVES the power chair and gets so excited when we go in the backyard to practice, practice, practice. We are practicing every afternoon and she totally gets it -- now we just have to get the modifications to stay in the correct place. If you hear a lot of squeals of excitement, it is us cheering our big girl on.

Critical RSV Vaccine Denied, Fought, then Approved by Health Net

I was more or less expecting a denial of coverage from Health Net this year for the very expensive Synagis vaccination that helps protect at-risk children against the human respiratory syncytial virus (RSV). RSV is the major cause of lower respiratory tract infection and hospital visits for infants and is most commonly dangerous for premature babies, but it also remains equally dangerous and potentially deadly for children with severe respiratory issues -- that would be Gwendolyn. I had heard through other SMA families that insurance companies start denying Synagis at the age of 2. When denied, the Synagis vaccination can be paid for out-of-pocket at a super-duper-fun-to-consider cost of $2,000 per shot -- the vaccination is given monthly during the RSV season (typically November through March).

So, when we received the denial from Health Net in September 2009 for Gwendolyn’s Synagis, I wasn’t surprised. The reason given was also not a surprise:

“...per Health Net Pharmacy and the 2009 American Academy of Pediatrics Red Book guidelines, Synagis is not medically indicated for children older than 2 years of age. Our records indicate Gwendolyn is now 2 years old, therefore the request is denied.”

Here’s the problem. Health Net and other insurance companies are trying to fit a square peg into a round hole with children like Gwendolyn. It’s the typical blanket denial based on standard guidelines and with Gwendolyn, or any child with SMA or similar conditions, nothing is standard or ordinary or typical. You see Health Net, SMA is a DEGENERATIVE disease. Gwendolyn’s muscles, including her ability to expand her chest wall and, therefore, breathe, are getting weaker and weaker and she is no less at-risk this year now that she is a ripe 2 years old than last year or when she was born. In fact, I’d argue that she’s at higher risk now given that she is weaker from a respiratory standpoint and, therefore, her ability to fight through a nasty bout with RSV is less realistic today than it was yesterday.

When we received the denial, even though I was expecting it -- I hit the roof! But, this isn’t my first health insurance fight, so I immediately started preparing my plan of attack for a long, ugly battle: I’d write detailed, well researched letters to every single Health Net executive and board member, file grievances and appeals with Health Net, contact the California Department of Insurance, do blog posts, send Tweets, annoy my “friends” with Facebook status updates, etc. Thankfully, this time I wouldn’t need to go to battle (well, save for this blog post). Unbeknownst to us, the denial was fought on our behalf by our amazing pediatrician. His office apparently wrote a detailed letter about why Gwendolyn and her condition was neither standard nor typical and why Health Net should strongly consider approving Gwendolyn for Synagis this year on an exception basis based on the facts of her specific condition.

I’ve done my fair share of Health Net bashing in the past -- usually for good reason -- but this time I want to give Health Net some credit for doing the right thing in the end -- and fairly quickly. In late October 2009 we received a reversal of the previous denial from Health Net for Gwendolyn’s Synagis. The reason given:

“The request is for Synagis for a member who was born at full term. The member currently uses BiPap for a respiratory condition and needs a feeding tube to treat symptoms associated with SMA. The member has had hospitalization in intensive care and is at chronic respiratory risk. The opinion of her treating physicians is that coverage would be appropriate on an exception basis. The member is two years of age on 10/4/09. The member is due to have a first dose of Synagis in November 2009. The member does not meet Health Net standard criteria for coverage, as the member would be over 2 years of age and was full term at birth. The file was reviewed with assistance from a Health Net pediatrician. The conclusion is that the member should be allowed the course of Synagis in view of the past medical history and the ongoing risk from possible respiratory illness. The denial is overturned on appeal.”

I could go on and on and on about how we shouldn’t have to fight a no-brainer fight like this in the first place, how I wish the insurance companies would think outside of the box and be proactive from time to time, and how I wish they would treat “members” less as human cattle and more as human beings. Rather, I’d prefer to thank Health Net this time for reconsidering and doing the right thing. And I’d also like to thank our amazing pediatrician and his staff for helping us get this important approval for Gwendolyn and for taking the fight out of our hands. Getting that reversal letter from Health Net was an unexpected breath of fresh air. And I’m pretty sure I stopped a few more grey hairs from popping through...at least until the next time :)

Weekend of Firsts

Over the weekend Bill flew out to Virginia to attend the FightSMA board meeting. We have been working with this SMA organization for nearly a year and a half through our PetitionToCureSMA.com campaign and they are enormous advocates for the SMA Treatment Acceleration Act. Thanks to their tireless energy, perseverance, and constant meetings on Capitol Hill (armed with the petition data), we are truly hopeful this important bill will be passed this year! (Psssssst, please sign the PetitionToCureSMA.com if you haven't already!) It is an honor to be working even more closely with them now that Bill was invited to be a member of their Board of Directors. But, as much as he wanted to go, this was the first time Bill has been that far away from us since Gwendolyn's diagnosis. We were all nervous -- especially Bill. It was a big step for all of us, but a good one.

While Daddy was away, Gwendolyn and I were busy bees. On Friday, I drove to Marina's house for a play date, which meant driving with Gwendolyn on the freeway for the first time by myself! On Saturday morning we went to Reese's birthday party, got to hang out with friends, play music, eat brightly colored cupcakes, and sing "Happy Birthday" to a very serious birthday girl! And on Sunday, Daalia came over for some morning coffee talk. Oh, and we practiced the power chair a lot! It was a fabulous weekend and thanks to the help of two wonderful ladies (E & D), I knew we'd be okay.



The second Bill walked through the door, Gwendolyn wanted nothing but Daddy hugs (Mom was chopped liver!), but I don't blame her -- he's pretty great!

Help SMA Research With Your Holiday Cards

I know that it’s a bit early for holiday shopping, but there is one part of the holiday season that requires a bit of advanced planning—your holiday cards. Between selecting them and mailing them out, this process can be tedious. The good news is that a lot of the merchants that we’ve highlighted below offer some great solutions to make this process much, much easier! That way, all that you need to think about is the fun stuff like choosing the one that you like the most! And the best part is that if you click on one of the links below, a portion of your purchase will be automatically donated to the Gwendolyn Strong Foundation and going toward SMA research!!! Your cards = giving back!!! Now that is the spirit of the holiday season!!!

HIP & MODERN DESIGNS (including PHOTO CARDS)

Minted (6% Donation)

Get 10% off stylish cards with free shipping if you order before Sunday!

http://shoptoendsma.we-care.com/EOffer/c10773

Pear Tree Greetings (5% Donation)

Get address labels of your choice free with a $49 cards purchase. Plus, get free shipping!

http://shoptoendsma.we-care.com/EOffer/c10750
Amy Adele (5% Donation)
Every paper item is printed on 100% post consumer recycled paper.
http://shoptoendsma.we-care.com/EOffer/c10775
Paper Culture (5% Donation)
They carry brands that use fine paper stock, rich inks, and crisp printing methods.
http://shoptoendsma.we-care.com/EOffer/c10776
RedStamp (5% Donation)
Get 10% off when you enter code HOLLYWIN
http://shoptoendsma.we-care.com/EOffer/c10780
Photoworks (7.5% Donation)
They even have Papyrus cards
http://shoptoendsma.we-care.com/EOffer/c6512

PHOTO CARDS

SmugMug (20% Donation)

Get 20% off your purchase when you enter coupon code WE-CARE20

http://shoptoendsma.we-care.com/EOffer/c10792

Kodak Gallery (3.5% Donation)

Choose from cards that start at $0.49!

http://shoptoendsma.we-care.com/EOffer/c10675

Fujifilm SeeHere (7.5% Donation)

Choose from cards that start at $0.59!

http://shoptoendsma.we-care.com/EOffer/c10769

Snapfish (4% Donation)

Send your loved ones an extra-special recordable greeting!

http://shoptoendsma.we-care.com/EOffer/c10770

Picaboo (5% Donation)

25% off orders over $50!

http://shoptoendsma.we-care.com/EOffer/c10771

GREEN CARDS (including E-CARDS)

The National Wildlife Federation Store(5%Donation)

Get $10 off orders of $75 or more!

http://shoptoendsma.we-care.com/EOffer/c10774

Blue Mountain (20% Donation)

Find e-cards that are artistic, interactive, poetic, musical, and much more!

http://shoptoendsma.we-care.com/EOffer/c10785

American Greetings (20% Donation)

Browse a wide variety of holiday e-cards that are free!

http://shoptoendsma.we-care.com/EOffer/c10784

CARDS to send from your BUSINESS

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SMA Research Study Needs SMA Moms

I think carrier screening is crucial to increasing awareness of SMA and in both treating and preventing it. And with SMA carrier prevalence as high as 1 in every 40 people, it is high time that SMA joins Cystic Fibrosis as a routine option for potential parents. I know most families impacted by SMA feel the same way and the Claire Altman Heine Foundation is working diligently to address this very complex issue.

This is not simple. And although the American College of Medical Genetics (ACMG) came out with a clear report stating, "Because SMA is a common genetic disorder in all populations, carrier testing should be offered to ALL couples regardless of race or ethnicity", the American College of Obstetrics and Gynecology (ACOG) has yet to endorse SMA carrier screening (or any new carrier screening for that matter). And until they do, OBGYNs will continue to be misinformed about prevalence and pass that misinformation on to their patients. That means that every single day a new child (or several) is diagnosed with SMA -- a death sentence. (On a side note -- although most OBGYNs do not yet talk to potential parents about SMA, many fertility clinics are beginning to make SMA carrier testing part of their regular screening litany prior to any treatment.)

Why is carrier screening important? Simple. Besides the obvious issue of providing prenatal options to couples who learn they are SMA carriers, there are clear studies that prove the earlier breathing and feeding interventions are given to SMA infants, the longer the life expectancy. And, many of the promising potential treatments that involve drug compounds to treat infants with SMA, require pre-symptomatic infants. Yes, PRE-symptomatic. That means with the current system, most newly diagnosed babies will not qualify for treatment because the disease has already started to ravage their little bodies by the time they are diagnosed.

Part of the issue stems from a patent issue. Just like the Breast Cancer genes (BRCA1 and BRCA2), the U.S. Patents and Trademark Office has allowed drug companies to patent many of the genes in our bodies. Yes, I know -- ludicrous. What this means for potential parents is that Athena Diagnostics owns the SMA gene and the test that determines if you are a carrier and can, therefore, charge whatever they want. Currently about $800. They also control licensing to other labs, creating a monopoly. This is wrong. And in May, the ACLU filed a lawsuit about this very issue. (It is in process).

So, why do I bring all of this up -- because I'm frustrated. I'm frustrated by this bureaucracy. I'm frustrated that this is not an issue of lack of science or technology. I'm frustrated that, basically, it boils down to money!

But, there is a new study that may help pave the way for SMA carrier screening to be offered to more women -- and I want to do everything in my power to help! Please help this study by calling Dr. Zadeh -- (650)721-1439. There is no blood work needed. There is no cost to you. Dr. Zadeh simply needs access to your medical records -- specifically the neck measurement of the fetus done around 10 weeks. Any mother who has or had a child with SMA can be part of this study.

From: Neda Zadeh, M.D. -- To the Claire Altman Heine Foundation:

You are invited to participate in a research study on the possible association between Nuchal Translucency (NT) measurement and fetuses affected with Spinal Muscular Atrophy (SMA). Our goal is to determine whether there is an association between increased NT measurements and SMA. If so, diagnostic testing for SMA may be offered to women with increased NT and no evidence of a chromosome abnormality of the fetus. We are only recruiting mothers of children confirmed to have SMA by molecular testing.

Involvement in this study is entirely voluntary and confidential. It will require your permission to access particular medical records for both you and your child. Your participation will not involve invasive procedures such as blood draw or tissue sampling. There will be no monetary compensation for your participation.

If you are interested in participating, or would like to hear more about this study, please contact me at (650)721-1439.

Sincerely

Neda Zadeh, M.D.
Medical Genetics Fellow
Stanford University
Division of Medical Genetics

On another side note, when I called Dr. Zadeh (she's super nice, by the way) she informed me that Stanford is now urging ALL potential parents to have SMA carrier screening because of the HIGH 1 in 40 rate. Yeah! They are one of the leading medical centers for a reason!!!

Acts of Kindness: Andrulaitis Family Fundraiser

We are once again humbled by the kindness and generosity of friends -- and strangers. A few weeks ago I was contacted by Mary Andrulaitis, a woman I've never met. She told me in her email that she heard about Gwendolyn through her involvement with PEP and has since been following our blog and journey. She then asked if I would be comfortable with her family selecting the Gwendolyn Strong Foundation and our fight against SMA as the beneficiaries of their yearly family fundraiser. I loved the way she talked about instilling the spirit of philanthropy in her children -- something I always imagined I'd do with my own. She didn't want us to do a thing, but wanted me to be comfortable with everything they did. Of course! We are honored and excited by the kindness and generosity of the Andulaitis family -- and the company she selected for her fundraiser looks fabulous!!! Here is what she sent her family and friends:

Dear Family + Friends

It's that time of year - as we head into the fun, chaos, and excess of the holidays - where our family chooses to focus on a community service project. Last year we held a successful week-long neighborhood food drive for the Food Bank of Santa Barbara County. This year we're doing something a little different....

Many months ago I learned about a beautiful little girl, Gwendolyn Strong, who lives in Santa Barbara and suffers from a little-known disease affecting young children called Spinal Muscular Atrophy, or SMA. I have since followed Gwendolyn's story via her blog at www.GwendolynStrong.com. SMA is a terminal and degenerative disease that causes weakness and wasting of voluntary muscles in children and infants. SMA will eventually impact every muscle in her body, hindering so many things that we take for granted - the ability to walk, sit, stand, eat, swallow, and even breathe. Gwendolyn's mind remains unaffected despite her failing body, and she is a bright and sensitive little girl with a big personality. SMA is a cruel and non-discriminating disease, and remains the #1 genetic killer of young children. There is currently neither a treatment nor a cure for SMA, but the National Institutes of Health selected SMA as the disease closest to treatment of more than 600 neurological disorders. We think that's pretty significant. Gwendolyn's parents, Bill and Victoria Strong, have committed themselves to raising awareness, funding research, and supporting other families impacted by SMA and our family has chosen to sponsor a fundraiser to benefit their charity, www.GwendolynStrongFoundation.org.

Now here's where you come in.....

Rock Scissor Paper, an online stationery and gift shop, has helped us set up a web-based fundraiser. Shop online NOW thru November 22nd at www.rockscissorpaper.com, and by using coupon code GSF9 you will get 10% off any of their products and 15% of all sales will go directly to the Gwendolyn Strong Foundation. Rock Scissor Paper sells a festive, fun, and funky line of stationery with zillions of products including greeting cards, thank you cards, blank note cards, invitations, gift tags, enclosure cards, personalized stationery, journals, and they have a great seasonal holiday shoppe. I also want to be sure to point out that all of their paper and stationery products are printed in the good ol' USA on recycled paper using soy-based inks and FSC certified papers from renewable resources, so you can feel good about purchasing their products! Environmental awareness is also very important to our family, so we're excited to have found such a great company willing to partner up with us. See the attached flyer for more details.

One final thing.....

Please forward the flyer to all of your friends, family and colleagues. Together we can help Gwendolyn and so many other children and families affected by SMA. There is no limit on what can be earned!

Thank you from our entire family,

Mary, Joe, Eden + Bode Andrulaitis

Thank you Andrulaitis family! Thank you so very much!

Happy 25th Month Birthday

Happy 25th month birthday sweet Gwendolyn. Every single day you are in our lives is a blessing and we know it! We love you big girl -- keep on fighting and wowing us with your courage and strength.

Gwendolyn being silly in Mommy's sunglasses!

Gwendolyn's First Steps

Over the last month we've been prepping Gwendolyn and getting her comfortable with her hot pink demo power chair at one of her therapy sessions every week. She's taken baby steps, as usual, warming up to the idea at first and slowly making her own decision when she's ready to take the next step.

Last week, she was very comfortable sitting and playing in the chair, so we decided to turn it on and give her the control for the first time. She did amazingly well and was in the seat, driving by herself, for more than five minutes. She needed help with her head support, but she was moving forward all alone. It was truly unbelievable to watch!

This week we added a Hensinger Collar that we purchased from SMA Supply to further support her neck and it really helped make her more comfortable. So today, on her second turn in the drivers seat, she did even better and was in the chair for an additional five minutes driving around the therapy room, looking for Mommy, smiling as she chased her, and starting to get the hang of the controls.

Stop for a second and think of what a huge step and accomplishment this is for her. In her two years of life, many seasoned doctors doubted her ability to stay alive, let alone drive a power chair some day. She's never crawled, walked, or sat up on her own and she's completely paralyzed -- save for the slight movement of her neck and fingers. Less than a year ago she couldn't be elevated at all -- at ALL -- without choking dangerously on her own secretions. Her entire life she's remained almost completely flat and she's never moved while looking straight ahead because we push her in her wheelchair/stroller facing back at us so we can always tell when she's choking and needs suctioning. So, think what a huge step this is for our little Gwendolyn. It's almost unbelievable.

I'd be lying if I said that I always thought this was possible -- there are many reasons why it shouldn't be. With a condition like SMA, words like "always" or "definitely" or "certainly" are not used lightly or often. Watching Gwendolyn sitting up unassisted and controlling her very own power chair, moving around the room and turning to see who's left and who's right, was very emotional for me. This was me watching my little girl crawl for the first time, take her very first steps in this world -- things I've never been able to experience with Gwendolyn and that I truly thought would never be possible at certain points along Gwendolyn's journey. I get goosebumps even writing about it. And most importantly was the look of pure joy and excitement on her face the entire time -- I'll never forget it! Ever.

We now have Gwendolyn's demo power chair at home with us. We'll be giving her time in it on a more regular basis, which should help her get more comfortable with the sensation of moving herself around and learning how to operate the controls. Baby steps, as usual. For now, I'm so proud of Gwendolyn and her courage to take her first steps -- huge first steps for her and for us on so many levels.

(The video is a bit shaky because I had to be quick on my feet to preserve my toes. Note to self: flip-flops and 300 pound power chair = not a good idea.)

Gwendolyn's Pumpkin

Oops, I forgot. Here is a picture of Gwendolyn's cute princess pumpkin. The darling kit was from Aunt Kristen and Gwendolyn decorated it with Gramma. I think it is adorable (and no mess -- awesome!).

Halloween Fun

We had a really great Halloween and our little piggy did, too! We went to the Paskins' house for some yummy Halloween themed treats that Sarah created -- and they were the most adorable and delicious goodies! Some families arrived in full costume, which I loved! (We were the Three Little Pigs, but our snouts were a bit steamy so they didn't last that long.) And all the kiddies were decked out as cute as can be.

After some fun exploring each other's costumes, sharing stickers, and eating treats, we headed out for our first foray into neighborhood trick-or-treating. The two year old posse all seemed a little confused by the entire Halloween concept -- dress up silly, walk around the neighborhood to stranger's houses, ask for treats -- but they LOVED the candy. Gwendolyn was definitely interested in following her friends, but we could see her little mind trying to figure out all the hullabaloo (it's a lot more difficult to grasp when you are not eating the candy).

It was a fun night and I know our little party girl thought it was a very fun and special party!