Hey, California! Helping cure Spinal Muscular Atrophy (SMA) is a easy as copy, paste, fill, and send! Contact our senators with the email addresses and letter below. Thanks!
Dear Senators Barbara Boxer and Dianne Feinstein:
On behalf of families like mine across California who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.
SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA, and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO), Whitehouse (RI), Begich (AK), Blumenthal (CT), and Kerry (MA).
This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders, such as SMA, Down Syndrome, and Duchenne Muscular Dystrophy. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.
We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across California. Thank you so much for your consideration.
YOU can ACT NOW to make a world of difference in as little as TWO MINUTES, to help kids with Spinal Muscular Atrophy (SMA) and other pediatric disorders. Please ask your Senators to help pass the National Pediatric Research Network Act (NPRNA) today! We provide you a sample letter at the end of this post to copy, paste, and send. Please lend your voice to kids in need and tell your friends.
SMA, the #1 genetic killer of young children, has no treatment or cure, but hope moved closer to reality as the U.S. House of Representatives passed the National Pediatric Research Network Act. (HR 6163). Only a small fraction of bills become law, so please take action to move the Act forward in the Senate today!
The Act would help advance medical research for various pediatric conditions and disorders. Those disorders specifically mentioned in the bill are SMA, Duchenne Muscular Dystrophy, Down Syndrome, and Fragile X.
The Act creates the National Pediatric Research Network through the National Institutes of Health (NIH). The network would create and fund up to 20 research groups to improve and coordinate pediatric research, design collaborative research projects, improve patient registries, conduct clinical trials, share research results, and train future researchers. The groups would consist of leading pediatric research institutions.
The goal is to ensure research for pediatric disorders, such as SMA, receive the treatments they deserve. The Act would foster a more coordinated and collaborative research effort. Instead of individual researchers working in isolation, the network would advance research with a more team-oriented approach, sharing priorities, goals, and information. The process will allow researchers to better know what other researchers are doing and have done, to build on existing medical knowledge.
Disease networks have led to medical breakthroughs in areas like childhood cancer research and childhood leukemia. Networks have improved outcomes for children born with congenital heart disease.
A lead sponsor of the bill, Representative Cathy McMorris Rodgers commented, “Too often, research into pediatric disorders has lagged behind research into other medical conditions. The time has come to take pediatric research to the next level.”
Getty Owl Foundation supports the bill, which is also endorsed by a variety of pediatric and medically-oriented organizations. In its passage, the bill enjoyed bipartisan support and moves on to the U.S. Senate.
The NIH selected SMA as the disease closest to a treatment of more than 600 neurological disorders. The bill is a great success in advancing our cause. It gives us added hope that the days of SMA are numbered and children and families affected by SMA and other pediatric disorders have a brighter future.
The National Pediatric Research Network Act is in the U.S. Senate as S. 3461. Please call and write your senators to urge them to support the bill and tell them what the bill means to you personally. We appreciate your help!
SAMPLE LETTER AND TALKING POINTS
Dear Senator [NAME]:
On behalf of families like mine across [STATE] who are working to find a treatment for spinal muscular atrophy (SMA), I write to urge you to cosponsor the National Pediatric Research Network Act (S.3461 / H.R. 6163). The House of Representatives passed this important legislation with broad bi-partisan support on Wednesday, September 19th thanks to the leadership of Reps. McMorris Rodgers (WA) and Capps (CA). NPRNA will benefit a broad array of pediatric diseases by promoting cooperation among multiple institutions and advancing the development of new therapies while making more efficient use of scarce research dollars.
SMA is the leading genetic killer of children under the age of two. It destroys motor neurons, which regulate voluntary muscle movements such as crawling, walking, head and neck control, swallowing and breathing. Research funding for this devastating disease over the past two decades has primarily come from private organizations, bringing several life-changing therapies to the doorstep of the clinic. To address the significant challenges of implementing national clinical trials for SMA and so many other diseases, a bipartisan group of senators, led by Sherrod Brown (D-OH) and Roger Wicker (R-MS), developed the NPRNA. We are proud that our list of cosponsors continues to grow and now includes Senators Grassley (IA), Blunt (MO), Whitehouse (RI), Begich (AK), Blumenthal (CT), and Kerry (MA).
This bill would strengthen the federal investment in pediatric research by supporting infrastructure and core services needed to support translational and clinical research for a broad array of rare pediatric disorders. The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation which will be required to communicate regularly with one another in order to promote collaboration and resource sharing.
We have made tremendous progress in advancing this legislation. As the bill comes before the Senate, your cosponsorship of this bill would mean the world to families like mine across [STATE]. Thank you so much for your consideration.
OR (Talking Points for phone call)
I am a constituent of Senator [NAME]
I am phoning today to urge Senator [NAME] to cosponsor the National Pediatric Research Network Act (S.3461/H.R. 6163)
This legislation will benefit SMA and other rare diseases.
There are nearly 7,000 rare diseases affecting 25 to 30 million people most of whom are children.
The Senator’s co sponsorship of NPRNA would mean the world to me and other families across [STATE]
THANK YOU FOR OUR CONSIDERATION
Special thanks to all SMA warriors and warriors of other pediatric disease communities, Representatives Lois Capps, Cathy McMorris Rodgers, Diana DeGette, Fred Upton, and Eric Cantor, and our friends at FightSMA and Gwendolyn Strong Foundation.
Since Getty was born and have graced us with her beautiful blue eyes and soulful demeanor, we have called her our little owl. Like good owl parents we taught our little one to “hoot” and that is about it in the owl department. Pretty much everything else in the raptor species can be pretty gruesome, so we chose to keep it lite and focus on the cuteness of owls. It also seemed to us that after Getty was born and after she was given this nickname, owls just seemed to appear out of no where. Not real ones of course, but owls seemed to become the trend in clothing, home decor, etc. I was often struck by how I would be away from Getty and I would be reminded of her by some random owl image. It was if she was telling me, “hello” or rather, “come home mom.”
I don’t get out much for obvious reasons, so I do not know what other stores offer by way of owl items, but I can tell you what Target’s inventory looks like and it is enough to drive a mom insane. 🙂
Target is roughly 1/4 mile away from our house and it is the go to place for really all things, now that they sell food. Mark or I will run in and get what we need and not spend too much time to wander around.
It has been nice on a couple of occasions to just walk the isles and just “check out”. I am not really looking for anything in particular but the place smells good, there is usually music blaring from the entertainment department and I can usually count on an occasional kid pleading with their parent about “needing” a toy of some kind All of this gives me a chance to slow down and take in all that Target has to offer. However, the other day something started to dawn on me that I had not realized before. Target has become an owlery (def: An abode or a haunt of owls)
I will say this much, I know that Halloween is coming up and I do understand that an owl is a perfectly good icon in regards to haunting and ghoulish things, but come on, cut a mom some slack.
And this isn’t even half of it. There are Kleenex boxes, salt and pepper shakers, lamps, pillows, knit hats, soap and sheets. Too be a fly on the wall as I walk through the isles of this store would be probably pretty funny. I have caught myself saying, “ahhh so cute. Oh Getty NEEDS this! Are you kidding?”
So sad really. The sheer will not to buy any owl is literally impossible. The amount of owls in our house is astounding but comforting at the same time. In a way it is kind of like the way we view the machines in our house that are for Getty in the house. They are here but we don’t even notice them anymore. Same with all the owls in the house. Two weeks ago we had the Apria Respiratory Therapist come in to monitor Getty’s bi-pap hours and he even made a mention about how we, “must love owls.” Funny, I hadn’t noticed it to the severity that he was implying.
I know the temptation is there to gather every owl I possible can to add to our collection, but we do practice restraint when needed. I just find it funny that our “convenient” Target around the corner is my biggest owl trap. 🙂
There is an owl in every room. I like being greeted in every room by a reminder that our own sweet little owl is just a couple rooms away. And even if it is tempting, it is a really nice reminder that even though Getty may not be right by me in the store, she is in my heart and within less than a mile away.
There are days when I am at Target that I long to bring her there, if not just for the sole purpose of having her play with the toys or touch the clothes or in the very least sit in the cart and journey with me up and down the isles. I do have moments of envy when I watch other kids strolling around with their mommies. In my head I think, “it’s not fair, and in my heart I think, “it’s not fair.” But after I check out and I get in the car and wipe away a few tears, I instantly smile because I know who is waiting for me at home. A beautiful smile and a squeal from my very own little owl.
It is not easy to take time off as a family. The walls of our home, while comforting and safe don’t match an opportunity to pack up the van and get out of town.
We didn’t really plan it actually. I think I just thought, “we need to get out of here”, and it just kind of worked out. We knew we wanted to go somewhere familiar, low altitude, somewhere with easy access for Getty, and somewhere we could just breathe and lose ourselves in nature.
I’d say we did that. 🙂 Oh and a place where Coopie could come too.
Guerneville, CA is a very sweet, little town that is pretty much hugged by redwoods and nourished by the Russian River.
It is quiet, it is slow, the temperature didn’t go over 70 degrees; it was perfect. It is the kind of town that once you arrive you unconsciously leave your mental baggage at the beginning of Main Street.
Our stay was for the Labor Day weekend. I perused the vacation home rentals the week prior and kept my fingers crossed on one in particular. Open floor plan and a big adaptable room for Getty. Most of the rentals are cabin like, which to us meant, narrow hallways, small rooms, and lots of stairs. So when I saw this one and I saw the amazing price for so many days I immediately crossed all fingers and toes.
And we got it! It obviously isn’t your average cabin in the woods. Very modern design outside and in. It was perfect for us. And to be surrounded with this view instantly gave us a new perspective.
It felt like every time I would have a worry, it was almost like the forest would shhhhh me and say, “shut up, look at this view.” 🙂
We really had no plans for the weekend. We knew we wanted to head over to the ocean, which was about 20 minutes away. We also wanted to check out Armstrong State Park. But most of the trip we just relaxed and hung out.
Getty loved the trip. The entire time she was in good spirits and enjoyed watching the wildlife and the great scenery. We brought books and activities to do with her. We tried to keep some of her routine the same. We also had times when we just wanted to wow her with new experiences.
Packing and unpacking was a lot easier this time around. Mark bought plastic tubs to organize all of Getty’s stuff. When we got the the house, we instantly started working on modifying her room. I wish I had taken a picture of what the room looked like before. I guess I would describe it as “romantic”. That quickly changed as we moved in.
Getty had everything she needed. We tried to mimic her set up at home as much as possible. The bed was not so comfortable, so if we do this again, we will definitely bring an overlay of foam. But overall the room was big enough for everything which was nice because small rooms can sure start to feel suffocating.
Off to Armstrong Redwoods State Park. It was just simply gorgeous. There were great paved routes we could all access. That morning we were actually able to put Getty in pants and a jacket. We haven’t been able to do that since I think last October. The weather has been so nutty, I don’t think we had a winter or a spring in Sacramento.
Anyways, we got to the park and it was just beautiful. Getty looked all over the place and got very quiet. That is when we know she is loving it. Just a calm serenity over her face as if to say, “wow this is cool.” Or I guess, “what the heck are those tall thing.” Either way, she was having a great time. Cooper was allowed on the walk as well. So his day also was the “coolest.”
After got out of the van and were all situated, we headed out on the trail. Getty was awfully chatty when we would stop. Actually to the point that she started to cry. She can get a little bossy. 🙂 She here is the, “keep moving you guys, I need to see everything”, picture.
This is ten minutes later.
What? We are in such a beautiful place and you fall asleep? 🙂 Just our luck. So we took a quick family picture, just in case she did not wake up on our trip. We wanted to remember the moment as a family, even if our sweet owl was in dreamland.
So we put her bi-pap on and we let her sleep while the three of us (Cooper included) admired the scenery.
The grounds are beautiful and the paved roads are actually paved and nice to walk along. Getty’s stroller can’t usually take every bump and can become uncomfortable for her if the ground is not flat. So it was smooth sailings all day.
Mark and Cooper got a chance to spend some time together.
And then after a little while on the walk our sweet baboo woke up.
We were so excited to continue our walk and had a great time. Mark and Getty touched a redwood.
Overall the trip to the park was amazing. It may seem simple that we went to a park, but for us it meant the world to be together as a family. So many parks are just simply not accessible for Getty. But this park was so nice and shaded, easy to move around, and an accessible place for Getty to use all of her senses.
After a few days of naps, eating inside and just relaxing, we headed to Fort Ross.
This place was NOT accessible, but it was still fun. :)We love history, so to show Getty this fort was very cool. She even got to ring the bell.
I titled this post “Serenity Vacation” for a reason. While it is not very easy to travel and while we always have to be at a heighten state of alert as an SMA family, there were moments that we were able to breathe and take in the time we had together. For this weekend at least we were able to let stresses go, let worries go, let our family reconnect in a way that we really have not been able to do for a long time. Getty had a great time and that IS all that matters.Or hope is to be able to come back very soon. There is definitely something about nature that calms the soul. The quiet peacefulness of wind whispering by and the gentle chirping of birds allows all of life’s worries to stay at bay.
And if you are not sure what serenity looks like, maybe this will help.
Yes folks, even Cooper needed some much needed R & R.
I wanted to take a moment to thank all of the SMA families and friends that offered to donate art pieces and silent auction gifts for not only our online auction, but our 2nd Annual Hoot the Grid. I love this time of year because we get to raise awareness more, since it is National Awareness month. We get to show our community that SMA has a name, a face, and that we are no different to anyone else in this world.
I was approached by a woman the other day that asked about SMA, to which I was thrilled. While we are in conversation she told me that she couldn’t be a carrier. She had a beautiful, non-SMA kiddo so that meant that she was not a carrier. Ahhh, what a teachable moment I thought to myself. I basically told her this, without the visual.
She paused a moment and then thanked me for putting it such easy terms. Then she said, “well if I get tested, I could have any kind of SMA, aren’t there like tons of mutations?” To which I did another fist pump of happiness and I told her, “no”. “you either have the SMA carrier gene or you don’t”. “It is that simple?” she said. And I said, “yes”.
Folks, this is why we do what we do. This is why we do events online and in our community. If we can reach one more person in the very least , to learn about SMA, we are satisfied. My hope is that the mom I spoke to will go and tell someone else and then that person tells someone else, etc.
So thank you to all the families and friends that helped make these events possible. I was asked that very same question, several times online during the auction as well as at our event here in Sacramento. One person at a time.
Thank you to:
Miss Stephanie Tomasegovich
Mr. Jeffery Lorenzen
The Goeppert Family & Nana Teri
Miss Morgan Saunders
Kaige’s Uncle Ryan and Sister, Paris
The McClain Family
The Kennedy Family
The Miller Family
The Sniezek Family
The Burks Family
The Calafiore Family
The Lohin Family
The Bundy Family
The Gooden Family
The Barnett Family
The Poluchowicz Family
The Pruitt Family
Mr. Ivan Pretorius
Miss MJ Purk
The Bonelli Family
The Shifflett Family
The Reed Family
The Engle Family
The Lorey Family
The Reed Family
The Gardner Family
Miss Getty Spaghetti
Thank you all for helping us make this event a reality two years in a row. We are ever so grateful and we appreciate the time and effort you all made to help us educate not only our community, but anyone that reads our blog.
I am still crunching the numbers. I will update on how much we were able to raise in a bit.