From the FightSMA website:
We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 2149, the "SMA Treatment Acceleration Act of 2009", has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor for their leadership.

This legislation builds upon the success of the SMA Treatment Acceleration Act introduced in the 110th Congress, which garnered 85 cosponsors in the House and 21 in the Senate, including then-Senator Barack Obama. The new version of the legislation has been modified slightly to ensure resources for SMA clinical efforts and infrastructure are maximized.

SMA is the number one genetic killer of children under the age of two. It is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and breathing. Approximately one in 40 people, or approximately 7.5 million Americans, carries the gene mutation that causes SMA. Each child of two carriers of the mutant gene has a one in four chance of being afflicted by SMA.

Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) as one of the diseases closest to treatment based on scientists' advanced genetic understanding of the disease and a strong collaboration between families, federal agencies, and patient advocacy groups. Researchers have identified the gene responsible for SMA, as well as a disease modifying "back-up" gene that has opened the door to promising new treatment pathways. This research is providing groundbreaking data for SMA and other disorders, including the muscular dystrophies, Lou Gehrig's disease, Friedriech's Ataxia, Fragile X syndrome, and Huntington's disease.

In order to build on the progress being made by investigators and bring treatments to children affected by SMA, a broad coalition of organizations, including Families of SMA, FightSMA, the Muscular Dystrophy Association (MDA) and the SMA Foundation, has united behind the SMA Treatment Acceleration Act of 2009, legislation aimed primarily at supporting a national clinical trials network for SMA.

Specifically, the "SMA Treatment Acceleration Act of 2009" provides for the following:

• Federal support for a national clinical trials network for SMA;
• Federal support to enhance the SMA patient registry and for expanded research on the epidemiology of SMA;
• Establishes an Interagency SMA Research Coordinating Committee to include federal agencies including NIH, SMA researchers, and SMA families, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA; and
• Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

Our organizations are issuing a "Nationwide Call to Action" for all SMA families, researchers, and friends, to help engage every Member of Congress in support of this bill and the great efforts of Congressmen Kennedy and Cantor.

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What does that mean for you? We are going to need EVERYONE to take time to contact their representatives in Congress and ask them to support this bill! Here are some tips on contacting them, as well as sample letters. If you decide to use the template for the sample letter, be sure to change the name of the bill and use the current one listed above! It does not have a name in the Senate yet, only the House. I'm sure the SMA organizations will be putting together new sample letters with the new information, so I will be sure to post those when they do. This is VERY IMPORTANT to me and all the other families affected by this horrible disorder!

Help me out here....

Okay...
I need to get an idea of how many cook books to order, so if you want one, two, or ten, please send an email to cooking4acure@mail.com You can also send recipes, ad requests, or anything related to this project over there. Once it gets closer to printing, I may go ahead and take preorders so I can help pay for the printing cost. It will help having all the email addresses and number of books needed so I can contact everyone to let them know we are ready to go. I really hope this works out. Many of us have dedicated a lot of time and love into working on it for Eli and all the other SMA kids.

ETA: I should have put how much we are hoping to sell them for! Sorry guys. They should be between $10-12, depending on the final count for the recipes. They are still coming in, so I am waiting on that to be complete; it looks like $10 right now.

Just a little vent.

Today is a day of frustration for me. I've been trying to do a few things to help raise money for SMA research, but it is all getting very discouraging for me lately. I really want to start my own nonprofit so I have an actual name and organization to do my projects under. Without that, I feel like I'm useless to do very much. The cook book I've been working on is going to cost me a lot of money to print. They give organizations enough time to sell the books to pay for the printing costs; individuals must pay before they are printed. So, I could possibly ending up sending a few thousand dollars and have a room full of unsold cook books. I have no idea how many to get printed or how "fancy" to make them. I don't know how to talk people into putting in ads or how to design or submit the ads.

I wanted to do another fundraiser around Eli's birthday, but the 5K fun run we were looking into really needs to be done under an organization name. My friend Kim has a great alternate plan, but again, we will see how it goes.

I just feel so helpless to do anything and these projects sometimes make me feel that I'm at least doing SOMETHING. I know it is not much, but it is SOMETHING. I feel like I'm at a point that I can either spend my money for a lawyer to help with setting up a nonprofit and have none left over to do projects OR do the projects but keep encountering obstacles. Ugh.

That's my vent for the day. Sorry. Just a frustrating week for me.

A Day in Pictures

Make an on-line slide show at www.OneTrueMedia.com

We went and took the new camera out for a day at the Arboretum. Hope you enjoy the pictures! I can't wait to learn how to use my camera to its full potential! It is great!

If you can, please try to wear pink today in remembrance of baby Georgia.

Flyer

(Here is a flyer I made up to try and get some ads. If you need it, you should be able to copy it and paste it into MS Word. I have the file I can email out too!)

Help Cure Spinal Muscular Atrophy!

• Spinal Muscular Atrophy is the leading genetic cause of death in infants and toddlers.
• SMA is incurable, untreatable, fatal, and underfunded.
• 1 in 35-40 Americans are carriers. 1 in 6,000 to 1 in 10,000 infants are born
  annually worldwide with SMA.
  

This cook book is being done to honor Eli, who became an angel at only 5 months of age.

‘Cooking for a Cure’ is a great cook book being put together to raise money to help find a cure for Spinal Muscular Atrophy. All proceeds from the book will go to FightSMA to help fund scientific research to end this horrible disease once and for all!

If you would like to help out, consider purchasing an ad in the cook book. It will be seen by many people around our area and all around the country. What a great marketing tool!

FULL Page: $75
1/2 PAGE (4 1/8" x 3 1/2") $45
1/4 PAGE (41/8" x 1 5/8") $30
PATRON Only the business or individual name will be listed – approx. 25-33 characters per line. $15

One small thing EVERYONE can do is sign the petition to urge our government to help fund research for a cure! You can find it at www.petitiontocuresma.com

Cats and SMA

Today I was researching a cat breed, Maine Coon, because Jason and I both love them and have considered getting one several times. I think getting a cat from a shelter is by far the best thing to do, but I figure if I have 3 of those already, maybe it is okay for me to get a pure bred cat? They are not cheap, so I decided to look over possible health problems they might have; to my surprise, they can have SMA! I had no idea that cats could have it too! I probably won't ever get one now. I figure we have already dealt with SMA once in our lives and that is enough. I'm glad I'm such a Google nut sometimes.

Many things I have read about losing a child have indicated that most marriages don't survive afterwards. I am glad we are holding things together so far. I LOVE Jason. I can't imagine a life without him. He is the most amazing husband and I feel lucky every single day that he has decided to call me his wife. He loves me and always goes out of his way to make each second of my life better in some way.

Because of this, it hurts me to know that going to work is quite heartbreaking for him. He hardly ever says anything, but the few clues he lets slip tell a big story. There are several pregnant ladies there; I know of at least one baby shower over the past few weeks. That would probably send me to bed in tears for a few days, so I know it is painful for him too. I think he also encounters some people who don't quite get HOW MUCH IT HURTS to hear about their little ones. I have heard a few comments that have been made and I'm glad his job is almost an hour away... I am very protective of him and I wouldn't mind setting some people straight. I get that they are proud of their children, but show a little compassion and sensitivity PLEASE. Ugh.

On a brighter note, I signed up for a history filled summer. From June 1st until August 16th I will be living a life full of American History. Those are the first classes I'll be taking on my journey to being a teacher. I dread it because I HATE history. I've managed to get two degrees without taking history, but I guess that streak has ended. I find it a little strange to have to take history in order to teach kindergarten or first grade, but oh well. It will get me out of the house every day if nothing else. :)

Yet another baby died of SMA this week. I played the lottery tonight in hopes of winning and doing some serious funding of research. Money is useless to me personally right now. It can't buy the only thing I really want. I'd love to have enough to make a difference for someone else though. Keep your fingers crossed for us.

Life after a loss is so different than life before. I am up early this morning. I try to get up early (if I can) on the days that Jason has to go to work. I like packing his lunch; I like the hugs before he goes. That's not why I do it though. I do it because I'm afraid I won't see him again. That something will happen and he won't return home. After losing my son, I'm now terrified I'll lose my husband too.

I remember one night a few weeks or maybe a month after Eli died we were in bed and Jason had already fallen asleep. I was still awake, as usual, and noticed that he had gotten really quiet. I tried to see if I could still see him breathing but I wasn't able to tell in the dark. I had to put my hands on him and make sure he was okay...and he was, but in those brief moments I was so afraid. So afraid.

That story wasn't my intention of starting this post today. I was just going to say I was up early today. Sometimes I don't know where my thoughts will lead once I start typing. I came to discuss the headlines in today's paper. I pulled up the e-edition of our local paper this morning and was blown away by the first 6 or so headlines. It makes me sad for our country and our people. So many of us have really lost our way...

The first story was about the increase in gun and ammo sales. Concealed handgun applications are close to double what they were last year. I don't mind people owning guns, but I worry why so many think they need them now. The next story was discussing how Texas was trying to put through a bill limiting access to teacher records. I agree that teachers have a right to privacy, but this bill would seal their criminal records. I may never have a school aged child, but I imagine if I do, I would want to know if their teacher was a convicted felon!

From there we go to the story of the driver who was driving drunk and talking on his cell phone during the horrible storms we had on Saturday... He killed 5 kids, 3 of his own, when he lost control of the car and drove into a flooded bayou. The surviving child, as well as 3 of her siblings, have been taken into custody by CPS after their mother tested positive for drugs. The next article talks about a 12 year-old who has been charged with capital murder of an 10 month old baby boy. At least 5 kids were left alone in an apartment and the mother(s) returned to find the dead baby. The police are having a hard time figuring out where the mothers of the kids were or how many kids were actually in the apartment at the time of the baby's death. I won't go into a bitter rant, but I'm sure you know what I'm thinking.

and finally, the last article I read was about the Morning After pill now being made available over-the-counter to 17 year-olds. I don't even know what to say about that one.

How sad it is that these are the headlines in my area right now? More guns, dead children, and pregnancy-terminating pills to teens.

More cook book stuff...

Sara has talked me into trying to sell ads for the cook book to help lower our cost and raise our profits a bit. I think it's great, but I hate asking businesses! I guess I will put it on my list of things to do for next week and get started! If any of my readers might know of a business that you think would be willing to help, let me know and I can email you the prices and paper work that would need to be completed. In addition, I'd like to do one page, called a Patron page; it is only text, but can list a business or personal name. There are 14 slots on the page and each slot is allocated up to 25 characters. We will be selling those for $15 each. I will be buying one in honor of Eli. :) There are many options though; whole page, half page, a third or fourth of a page, and even a sixth of a page!

A Few Random Pictures

My niece, Lana. Isn't she a cutie?

Mr Crab attended last night's Astros game.

My sweet Bandit.

Thank You

I just wanted to say thank you again to everyone who helped out with our crab project! I got a beautiful thank you card from the group at the hospital thanking us for the donation. We wouldn't have been able to do it without all the support and love you all have offered since Eli's death. It means so much to know that we are helping out and giving back.

I just sent $200 to FightSMA today. That included many donations that were given on Baby Eli day.

My great friend Sara is working hard to help me get recipes for the cook book so that we can get it published before Eli's birthday. If you haven't sent me your recipes, be sure to get them in soon!

Make video montages at www.OneTrueMedia.com

Eli was on my mind a lot tonight so I made this.