I've been putting this post off because I was unsure of what I should say, how I should say it...just how I should share the awful news that my sister, the Beloved Aunt Amy passed away in October.
It's been so very sad, and yet...ALS creates such a long slow decline that by the time she passed away she was already gone, in the physical sense, from most events...so this didn't feel like our first Christmas without her because it's been a few years since she'd been to Christmas. The biggest difference was that I wasn't emailing her photos from our family holiday get togethers, and school events...I couldn't resist posting some on her Facebook wall though.
Mostly, we're all just glad that she's done with ALS...but I didn't want the year to end without remembering her here.
Showing posts with label ALS. Show all posts
Showing posts with label ALS. Show all posts
Saturday, December 31, 2011
Saturday, November 19, 2011
Thursday, October 21, 2010
The ALS Registry Is A Go
All People with ALS Can Enroll in the Registry TODAY.
Dear Nancy,
We are thrilled to announce that the National ALS Registry is now fully operational! Every single person with ALS across the country can begin enrolling in the Registry today! Just go to www.cdc.gov/als, sign up and join tens of thousands of PALS nationwide in adding your name to the fight for a treatment and cure.
Full implementation of the Registry is the culmination of more than six years of advocacy by The ALS Association and advocates across the country who worked with Congress to introduce and enact The ALS Registry Act and secure the funding necessary to move this critical research project forward.Because of your advocacy, every person with ALS will be counted in the fight against Lou Gehrig’s Disease.
Because of your advocacy, the federal government is launching what may become the single largest ALS research project ever created. And because of your advocacy, we are beginning a new era in which the Registry will capture an unprecedented amount of information about the disease that could lead us to discover the cause, treatment and cure for ALS!
However, we need every person with ALS in the United States to enroll in the Registry! Therefore, if you are a PALS, go to www.cdc.gov/als and enroll today. We also encourage you to share news about the Registry with your support group, friends, email list and everyone else you know with ALS or who may know someone with ALS. Spread the word!
The ALS Association has created a special section of our website dedicated specifically to the National ALS Registry. The site, www.alsa.org/registry, includes instructions on how to enroll, answers to frequently asked questions, brochures and flyers that you can print and share, and much more. People with ALS also can access the Registry directly from the site.
The ALS Association would like to thank every person with ALS and every advocate across the country for helping to make the Registry possible! You truly are making a difference in the fight for a treatment and cure.
If you have any questions about the ALS Registry or would like assistance enrolling, please contact us at advocacy@alsa-national.org.
Thank you!
Dear Nancy,
We are thrilled to announce that the National ALS Registry is now fully operational! Every single person with ALS across the country can begin enrolling in the Registry today! Just go to www.cdc.gov/als, sign up and join tens of thousands of PALS nationwide in adding your name to the fight for a treatment and cure.
Full implementation of the Registry is the culmination of more than six years of advocacy by The ALS Association and advocates across the country who worked with Congress to introduce and enact The ALS Registry Act and secure the funding necessary to move this critical research project forward.Because of your advocacy, every person with ALS will be counted in the fight against Lou Gehrig’s Disease.
Because of your advocacy, the federal government is launching what may become the single largest ALS research project ever created. And because of your advocacy, we are beginning a new era in which the Registry will capture an unprecedented amount of information about the disease that could lead us to discover the cause, treatment and cure for ALS!
However, we need every person with ALS in the United States to enroll in the Registry! Therefore, if you are a PALS, go to www.cdc.gov/als and enroll today. We also encourage you to share news about the Registry with your support group, friends, email list and everyone else you know with ALS or who may know someone with ALS. Spread the word!
The ALS Association has created a special section of our website dedicated specifically to the National ALS Registry. The site, www.alsa.org/registry, includes instructions on how to enroll, answers to frequently asked questions, brochures and flyers that you can print and share, and much more. People with ALS also can access the Registry directly from the site.
The ALS Association would like to thank every person with ALS and every advocate across the country for helping to make the Registry possible! You truly are making a difference in the fight for a treatment and cure.
If you have any questions about the ALS Registry or would like assistance enrolling, please contact us at advocacy@alsa-national.org.
Thank you!
Friday, September 17, 2010
The Walking Weekend
Last weekend we attended the ALS Walk in Southern IL. Switching back to the fall season was a good move because June in St. Louis is WAY hot. The weather was just cool enough on Saturday.
You're invited to support Amy's Army if you're so inclined.
All that walking just wiped her out!
You're invited to support Amy's Army if you're so inclined.
E1 just heard the announcement that she won a fleece blanket as an attendance prize.
All that walking just wiped her out!Sunday, June 28, 2009
Steaminess Noted
(email from the ALS association)
Walk to Defeat ALS Heat Advisory
The Walk to Defeat ALS will be held tomorrow June 27th in Forest Park across from the Education and Visitor Center. The forecast is predicting extremely hot weather. We are asking our walkers, patients and families to use precautions in planning for this event. Our activities will take place in the morning and should be over before the hottest part of the day. However, if you feel the heat will be too difficult for you to manage safely, please know you do not have to physically walk to participate. We will have staff accepting registrations and donations Saturday morning as well as in the office on Monday.
Walk to Defeat ALS Heat Advisory
The Walk to Defeat ALS will be held tomorrow June 27th in Forest Park across from the Education and Visitor Center. The forecast is predicting extremely hot weather. We are asking our walkers, patients and families to use precautions in planning for this event. Our activities will take place in the morning and should be over before the hottest part of the day. However, if you feel the heat will be too difficult for you to manage safely, please know you do not have to physically walk to participate. We will have staff accepting registrations and donations Saturday morning as well as in the office on Monday.
Saturday, June 27, 2009
Steamy
We didn't walk.
The temperature and humidity conspired and gave us some weather to rival New Orleans. It's steamy and steamy with all the steaminess. For a short time, we considered just participating in the 1-mile walk (as opposed to the 3-mile walk)...but then we'd be driving an hour to walk for a half and hour...and it just didn't make sense. And it's hot and steamy. Did I mention the steaminess? Why must the walk be in June? June is steamy.
Our off-line donations were brought over by my brother and his wife, and if we get t-shirts anyway I'll still give it away. If not, I've got last year's - washed, but never worn (I prefer v-neck to crew neck) that I'll give away instead.
The temperature and humidity conspired and gave us some weather to rival New Orleans. It's steamy and steamy with all the steaminess. For a short time, we considered just participating in the 1-mile walk (as opposed to the 3-mile walk)...but then we'd be driving an hour to walk for a half and hour...and it just didn't make sense. And it's hot and steamy. Did I mention the steaminess? Why must the walk be in June? June is steamy.
Our off-line donations were brought over by my brother and his wife, and if we get t-shirts anyway I'll still give it away. If not, I've got last year's - washed, but never worn (I prefer v-neck to crew neck) that I'll give away instead.
Wednesday, June 24, 2009
Walking In The Lou
We're walking in the St. Louis ALS Walk this Saturday.
And you want to donate, right?
Great! Go here!
I will send my ALS Walk participant t-shirt to one random donor.
This should totally be one of the pictures from last year's walk, but I can't find them. Where did they go? Instead, it's a picture from St. Louis Zoo, which is in Forest Park where the walk will be.
Thursday, October 09, 2008
President Signs ALS Registry Act!
(From the ALS Association)
President Bush signed the ALS Registry Act into law late today. Our victory is now official!
It has been a long difficult fight, and we want to thank everyone who continuously reached out to their Members of Congress throughout the legislative process to make this victory possible. You have made a difference!
We are now prepared to take the next steps in partnering with the government to build the registry. However, we need you to continue to stay involved. That's because we must work with Congress to secure funding for the registry. Over the past three years, The ALS Association has worked with Congress to appropriate nearly $5 million to launch registry pilot projects, but much more will be needed in order to expand upon these projects and begin to collect information on a broader scale.
We will keep you updated on the latest developments. In the meantime, please remember to thank your Members of Congress! Let them know that the ALS community appreciates their support in the fight for a treatment and cure. Thank you letters you can send are available in the Advocacy Action Center of our website: http://capwiz.com/alsa/home/.
Once again, thank you and congratulations to everyone. GREAT JOB!
President Bush signed the ALS Registry Act into law late today. Our victory is now official!
It has been a long difficult fight, and we want to thank everyone who continuously reached out to their Members of Congress throughout the legislative process to make this victory possible. You have made a difference!
We are now prepared to take the next steps in partnering with the government to build the registry. However, we need you to continue to stay involved. That's because we must work with Congress to secure funding for the registry. Over the past three years, The ALS Association has worked with Congress to appropriate nearly $5 million to launch registry pilot projects, but much more will be needed in order to expand upon these projects and begin to collect information on a broader scale.
We will keep you updated on the latest developments. In the meantime, please remember to thank your Members of Congress! Let them know that the ALS community appreciates their support in the fight for a treatment and cure. Thank you letters you can send are available in the Advocacy Action Center of our website: http://capwiz.com/alsa/home/.
Once again, thank you and congratulations to everyone. GREAT JOB!
Tuesday, September 23, 2008
WOO! Thanks if you took part!
(from the ALS Association)
Victory!
Senate Passes the ALS Registry Act
A few minutes ago, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference! The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law. Congratulations to everyone!
Wednesday, September 17, 2008
While We're Feeling All Political
(From the ALS Association)
With just a few weeks remaining before Congress adjourns for the fall elections, the time has come for the Senate to vote on S. 3297 and pass the ALS Registry Act. We anticipate that the Senate may hold a series of votes on S. 3297 at any time from now until the end of the month so it is absolutely critical that you reach out to your Senators TODAY. This may be our last chance to pass the ALS Registry Act this year and take the next steps in creating a national ALS patient registry.
Thanks to your continued outreach, we are now just five votes short of the 60 we need to pass S. 3297! So please go to the Advocacy Action Center of our website and tell your Senators not to leave town until they pass this critical legislation. Let them know that people with ALS cannot afford to wait until next year. Let them know that politics should not come before patients' lives and that arguments that it costs too much are just excuses (the bill is an authorization and does not appropriate a single dollar!). And let them know you will be watching how they vote. Let's finish the job and enact the ALS Registry Act this year!
In addition to grassroots efforts, The ALS Association also has engaged in other advocacy efforts here in Washington. We helped to organize a coalition of more than 140 different organizations who recently sent a letter to the Senate in support of S. 3297. Moreover, Oprah Winfrey has helped generate support for S. 3297 during her daytime talk show by requesting viewers urge Congress to support one of the bills included in S. 3297. These combined efforts, along with your grassroots outreach, are sending a loud and clear message that hundreds of organizations representing millions of Americans are in this fight together. We want the Senate to pass S. 3297 this year. So again, please contact the Senate today!
Finally, as you reach out to the Senate, we also want to emphasize how important it is for you to support S. 3297 and not advocate for the ALS Registry Act to be considered as a separate piece of legislation. Our supporters in the Senate have included the ALS Registry Act as part of S. 3297 in order to pass the bill this year. And it likely is the only way this can be accomplished, for there simply is not enough time remaining in this year's session to pass the ALS Registry Act as a stand-alone bill. In fact, if we do not unite behind S. 3297, Senator Tom Coburn will succeed in his more than two year quest to kill the ALS Registry Act. We can't let that happen. People with ALS can't afford to wait any longer.
Contact your Senators TODAY!
If you have any questions or would like assistance reaching out to your Senators, please contact the Advocacy Department at advocacy@alsa-national.org.
With just a few weeks remaining before Congress adjourns for the fall elections, the time has come for the Senate to vote on S. 3297 and pass the ALS Registry Act. We anticipate that the Senate may hold a series of votes on S. 3297 at any time from now until the end of the month so it is absolutely critical that you reach out to your Senators TODAY. This may be our last chance to pass the ALS Registry Act this year and take the next steps in creating a national ALS patient registry.
Thanks to your continued outreach, we are now just five votes short of the 60 we need to pass S. 3297! So please go to the Advocacy Action Center of our website and tell your Senators not to leave town until they pass this critical legislation. Let them know that people with ALS cannot afford to wait until next year. Let them know that politics should not come before patients' lives and that arguments that it costs too much are just excuses (the bill is an authorization and does not appropriate a single dollar!). And let them know you will be watching how they vote. Let's finish the job and enact the ALS Registry Act this year!
In addition to grassroots efforts, The ALS Association also has engaged in other advocacy efforts here in Washington. We helped to organize a coalition of more than 140 different organizations who recently sent a letter to the Senate in support of S. 3297. Moreover, Oprah Winfrey has helped generate support for S. 3297 during her daytime talk show by requesting viewers urge Congress to support one of the bills included in S. 3297. These combined efforts, along with your grassroots outreach, are sending a loud and clear message that hundreds of organizations representing millions of Americans are in this fight together. We want the Senate to pass S. 3297 this year. So again, please contact the Senate today!
Finally, as you reach out to the Senate, we also want to emphasize how important it is for you to support S. 3297 and not advocate for the ALS Registry Act to be considered as a separate piece of legislation. Our supporters in the Senate have included the ALS Registry Act as part of S. 3297 in order to pass the bill this year. And it likely is the only way this can be accomplished, for there simply is not enough time remaining in this year's session to pass the ALS Registry Act as a stand-alone bill. In fact, if we do not unite behind S. 3297, Senator Tom Coburn will succeed in his more than two year quest to kill the ALS Registry Act. We can't let that happen. People with ALS can't afford to wait any longer.
Contact your Senators TODAY!
If you have any questions or would like assistance reaching out to your Senators, please contact the Advocacy Department at advocacy@alsa-national.org.
Tuesday, August 26, 2008
Let's Move Things Along
Or at least down the page.
Ali, no worries. You didn't sound like a dolt - as I said, it's a good tune...just sad lyrics.
Amy is settling in as well as can be. Nelson reports a few smiles, and she's more receptive to visitors. Things are still a little rocky, as the nursing home has had ALS patients in the past but doesn't seem to have any practical knowledge of ALS patients...if that makes sense, but Nelson is working on a few things that should hopefully make things better all around.
So! With that, I think all of you all should go read Mir's WantNot site today. Mir has some good information, particularly for any of you young whippersnappers just entering the real world.
It will help you manage saving for retirement while figuring out how to support your second child who wants to go to the Olympics for both gymnastics and swimming.
And, I'll leave you with my new favorite song....with Hawaii footage to boot...
Ali, no worries. You didn't sound like a dolt - as I said, it's a good tune...just sad lyrics.
Amy is settling in as well as can be. Nelson reports a few smiles, and she's more receptive to visitors. Things are still a little rocky, as the nursing home has had ALS patients in the past but doesn't seem to have any practical knowledge of ALS patients...if that makes sense, but Nelson is working on a few things that should hopefully make things better all around.
So! With that, I think all of you all should go read Mir's WantNot site today. Mir has some good information, particularly for any of you young whippersnappers just entering the real world.
It will help you manage saving for retirement while figuring out how to support your second child who wants to go to the Olympics for both gymnastics and swimming.
And, I'll leave you with my new favorite song....with Hawaii footage to boot...
Wednesday, August 20, 2008
If Only
If only my last post was regarding something exciting, as Ali suggested in the comments.
That song, or more the lyrics to that song are what made me realize that maybe what I was feeling was more than your average postpartum depression several months after E3 was born...
That song, or more the lyrics to that song are what made me realize that maybe what I was feeling was more than your average postpartum depression several months after E3 was born...
There’s an emptiness inside her
And she’d do anything to fill it in
But all the colors mix together - to grey
And it breaks her heart
Yeah. So.
My sister Amy was moved to a nursing home this week.
And that sentence does not even come close to covering things. It wasn't nearly as simple as those eleven words. It was...oh, 'complicated' doesn't really say it right...neither does 'confusing'... I think 'fugly' is the word I'm looking for...can I say fugly on the Internet?
ALS sucks.
Plus, as a bonus, E1's BFF may be moving in the next year or so. And by 'may' I mean it's almost certain because I spoke with her mom tonight and she said one, maybe two years tops.
E1's cried a lot in recent days.
Oh, and school started Tuesday.
As I tried to will myself to sleep the other night, using all my mental stress-reduction tricks to attempt to turn off my brain, the words to Grey street floated right though - my brain's way of mocking me perhaps?
I saw today that DMB's sax player LeRoi Moore passed away.
It's a great tune even though the lyrics are, well...grey.
Thursday, January 24, 2008
National ALS Registry Seeks Support of Senator Obama
A frequent commenter emailed to ask about Barack Obama's position on the ALS Registry Act.
Truthfully, my information is second-hand; something I was told the day of the ALS Walk when walk organizers were asking us to sign letters of support for the registry. It was also mentioned in the newspaper in Mt. Vernon, IL, which is where we participated in the ALS Walk.
However, Gacki said, Senator Barack Obama’s office tells her that the junior senator does not usually sign on to medical-type bills, though she thinks he would cast a favorable vote when the bill comes to the floor. Calls over the weekend to Obama’s Washington D. C. and Marion, Ill., offices were not answered.
According to Barack Obama's website, he supports:
So why he's holding out on the ALS Registry I have no idea.
This is an explanation of the proposed ALS Registry.
Here is a blog written by a person with ALS, and his letter to the editor.
Here is a Wall Street Journal article emphasizing the need for the ALS Registry.
Again, please contact your Senator.
Truthfully, my information is second-hand; something I was told the day of the ALS Walk when walk organizers were asking us to sign letters of support for the registry. It was also mentioned in the newspaper in Mt. Vernon, IL, which is where we participated in the ALS Walk.
However, Gacki said, Senator Barack Obama’s office tells her that the junior senator does not usually sign on to medical-type bills, though she thinks he would cast a favorable vote when the bill comes to the floor. Calls over the weekend to Obama’s Washington D. C. and Marion, Ill., offices were not answered.
According to Barack Obama's website, he supports:
- Lowering Costs Through Investment in Electronic Health Information Technology Systems: Most medical records are still stored on paper, which makes it hard to coordinate care, measure quality or reduce medical errors and which costs twice as much as electronic claims. Obama will invest $10 billion a year over the next five years to move the U.S. health care system to broad adoption of standards-based electronic health information systems, including electronic health records, and will phase in requirements for full implementation of health IT. Obama will ensure that patients' privacy is protected.
- Advance the Biomedical Research Field: As a result of biomedical research the prevention, early detection and treatment of diseases such as cancer and heart disease is better today than any other time in history. Barack Obama has consistently supported funding for the national institutes of health and the national science foundation. Obama strongly supports investments in biomedical research, as well as medical education and training in health-related fields, because it provides the foundation for new therapies and diagnostics. Obama has been a champion of research in cancer, mental health, health disparities, global health, women and children's health, and veterans' health. As president, Obama will strengthen funding for biomedical research, and better improve the efficiency of that research by improving coordination both within government and across government/private/non-profit partnerships. An Obama administration will ensure that we translate scientific progress into improved approaches to disease prevention, early detection and therapy that is available for all Americans.
So why he's holding out on the ALS Registry I have no idea.
This is an explanation of the proposed ALS Registry.
Here is a blog written by a person with ALS, and his letter to the editor.
Here is a Wall Street Journal article emphasizing the need for the ALS Registry.
Again, please contact your Senator.
Wednesday, January 23, 2008
Contact Your Senator
As the Senate returns to Washington, DC this week to reconvene for the second session of the 110th Congress, now is the time to continue your outreach to the Senate in support of the ALS Registry Act (S. 1382). Thanks to the efforts of advocates from across the country, nearly 70 Senators - more than two-thirds of the Senate - have cosponsored the bill! However, it is important that we continue to generate new cosponsors.
Listed below are the Senators who have yet to cosponsor the ALS Registry Act. If you live in one of these states, please contact your Senator today and forward this alert to friends, family and colleagues who live in these states as well. Sample letters that you can personalize are available in the Advocacy Action Center of our website. Let Senators know how important an ALS registry is to their constituents and why it is so critical that the Senate pass the bill as soon as possible. Let them know that people with ALS don't have time to wait!
Please remember, since Members of Congress are most responsive to their constituents, only contact these Senators if you live in their state. If your Senators already have cosponsored the bill, please thank them and ask that they work with their colleagues to pass the ALS Registry Act as soon as possible this year.
Arizona: Senators John McCain & Jon Kyl
Colorado: Senators Wayne Allard & Ken Salazar
Idaho: Senator Mike Crapo
Illinois: Senator Barack Obama (note from me: He claims he won't vote on 'medical' things because he has no medical knowledge or somesuch. This, to me, is not a medical issue but a technology issue.)
Indiana: Senator Richard Lugar
Kansas: Senator Pat Roberts
Kentucky: Senator Mitch McConnell
Mississippi: Senator Roger Wicker
Missouri: Senator Kit Bond
Nebraska: Senator Ben Nelson
Nevada: Senator John Ensign
New Hampshire: Senator Judd Gregg
New Mexico: Senator Pete Domenici
Ohio: Senator George Voinovich
Oklahoma: Senators James Inhofe & Tom Coburn
Pennsylvania: Senator Arlen Specter
Tennessee: Senators Lamar Alexander & Bob Corker
Texas: Senators Kay Bailey Hutchison & John Cornyn
Utah: Senator Orrin Hatch
West Virginia: Senators John Rockefeller & Robert Byrd
Wisconsin: Senators Herb Kohl & Russ Feingold
Wyoming: Senator John Barrasso
As we continue to work with our champions in the Senate, Senators Harry Reid (D-NV) and John Warner (R-VA) to bring the ALS Registry Act to the floor for a vote, we will keep you up-to-date on the latest developments and let you know what additional grassroots outreach is requested by Senators Reid and Warner.
In the meantime, please keep up the great work!
Thank you! (this is from an ALSA Advocacy email)
Listed below are the Senators who have yet to cosponsor the ALS Registry Act. If you live in one of these states, please contact your Senator today and forward this alert to friends, family and colleagues who live in these states as well. Sample letters that you can personalize are available in the Advocacy Action Center of our website. Let Senators know how important an ALS registry is to their constituents and why it is so critical that the Senate pass the bill as soon as possible. Let them know that people with ALS don't have time to wait!
Please remember, since Members of Congress are most responsive to their constituents, only contact these Senators if you live in their state. If your Senators already have cosponsored the bill, please thank them and ask that they work with their colleagues to pass the ALS Registry Act as soon as possible this year.
Arizona: Senators John McCain & Jon Kyl
Colorado: Senators Wayne Allard & Ken Salazar
Idaho: Senator Mike Crapo
Illinois: Senator Barack Obama (note from me: He claims he won't vote on 'medical' things because he has no medical knowledge or somesuch. This, to me, is not a medical issue but a technology issue.)
Indiana: Senator Richard Lugar
Kansas: Senator Pat Roberts
Kentucky: Senator Mitch McConnell
Mississippi: Senator Roger Wicker
Missouri: Senator Kit Bond
Nebraska: Senator Ben Nelson
Nevada: Senator John Ensign
New Hampshire: Senator Judd Gregg
New Mexico: Senator Pete Domenici
Ohio: Senator George Voinovich
Oklahoma: Senators James Inhofe & Tom Coburn
Pennsylvania: Senator Arlen Specter
Tennessee: Senators Lamar Alexander & Bob Corker
Texas: Senators Kay Bailey Hutchison & John Cornyn
Utah: Senator Orrin Hatch
West Virginia: Senators John Rockefeller & Robert Byrd
Wisconsin: Senators Herb Kohl & Russ Feingold
Wyoming: Senator John Barrasso
As we continue to work with our champions in the Senate, Senators Harry Reid (D-NV) and John Warner (R-VA) to bring the ALS Registry Act to the floor for a vote, we will keep you up-to-date on the latest developments and let you know what additional grassroots outreach is requested by Senators Reid and Warner.
In the meantime, please keep up the great work!
Thank you! (this is from an ALSA Advocacy email)
Thursday, September 27, 2007
Virtual High-Five
This morning, the full House Energy and Commerce Committee unanimously passed the ALS Registry Act (H.R. 2295)! The bill now heads to the House floor for a vote, the final stage of the legislative process in the House of Representatives!
As the ALS Registry Act moves to the House Floor, I encourage you to continue to reach out to your U.S. Senators using the online Advocacy Action Center.
As the ALS Registry Act moves to the House Floor, I encourage you to continue to reach out to your U.S. Senators using the online Advocacy Action Center.
Friday, September 21, 2007
Again With The Fast Week
Where did the week go? Seriously. It's not like we had a bundle of things going on that time just zipped on by, so what, how, where?
For more elaboration on HOW WELL our team rocked the ALS Walk - the event goal was $8,000. Our team raised almost $6,200. Of course, we had more walkers as well...actually, there were a lot more walkers overall this year.
I was a little frenzied that morning, and walked as though a forest fire was licking at my heels. You see, in what I considered a moment of brilliance I planned E2's birthday party on the same day. All the pertinent guests would be down our way anyway, so why not just have them all for lunch and birthday festivities? Genius!
Sadly, I did not consider soccer season. One nephew was missing the walk to play his game, his brother had a game later that afternoon, and Birthday Girl E2 had a game at 2pm.
And we crammed it all in that day.
Oh, we kept it as simple as we could, and Aunt Christine was out from Texas to serve as my party assistant, but still...crazy. Here's how my insanity played out for all involved.
The girls excitedly showed off the streamers (Gryffindor colors) and gold 'flippendo's' (decorations that resemble a graphic image from the Harry Potter computer games) to my parents and my aunt as they arrived. We headed to the walk with them caravaning behind us.
Once at the walk location, we signed-in, chatted for a while, and then walked (I would have sore shins for two days following) around the lake three times. After taking some photos and making a pit-stop at the restroom we jumped in the van and headed home to the party. See how easy that was?
Meanwhile, Aunt Christine picked up a veggie tray, cole slaw, and potato salad at the grocery store. My mother-in-law picked up an ice cream cake (special request that they make it the first of the day using newly washed utensils in a peanut-free area - Go Dairy Queen!), and waited at our house for the call telling her we were on our way home. Aunt Christine also went and picked up the nephew (not her nephew though) from his soccer game.
As we lit out from the walk, I called my mother-in-law so she could get the Papa Murphy'sTake and Bake pizzas started.
On the drive home I realized I'd forgotten to pull the crock full of roast from the fridge and put it in the crock-pot shell and turn it on...I was making Italian Roast Beef in case anyone decided to hang around until dinner.
We arrived home, trailed by my sister and her family (E2's Godparents), Aunt Christine and nephew were here, and the pizzas were ready. I cracked open the veggie tray and some chips and we all dug in - even before my parents arrived from the walk. Hey, you stay to chat it's your own lunch. I got the crock pot going on high.
Then we opened gifts.
Then we sang happy birthday and had cake.
Then E2 slapped on her soccer gear and she and Rob left.
Then mass chaos ensued.
The Grandparents, the other two E's and I were attending the soccer game. My sister and her family were leaving to attend other nephew's afternoon game. I threw some candy in their direction with a promise that they could come over some other Sunday and have some time to play with the girls. There was much jostling as all the soccer attendees decided whether they were driving or walking to the park.
I found the goalie shirt and the cups for the water jug that Rob needed for the game just before he called to ask me to grab money to pay their referees, and we all trooped up to the park.
We watched the game and wondered why the opposing team was even in our league as they showed impeccible skill.
We returned home and collapsed in the backyard while E1 and E2 (with her new skates) maimed and bruised themselves in an effort to learn to skate in the garage.
Earlier in the week, as I was dreading how rushed the day was going to be - fully aware that it was my own darn fault, E2 complained that she wished she didn't have to share her birthday party with the walk and her soccer game. The guilt, oh how it stabs!
I agreed with her and promised that next year we'd make sure her party had it's own day. It seemed like such a good idea at the time, you know? Yet another lesson learned.
For more elaboration on HOW WELL our team rocked the ALS Walk - the event goal was $8,000. Our team raised almost $6,200. Of course, we had more walkers as well...actually, there were a lot more walkers overall this year.
I was a little frenzied that morning, and walked as though a forest fire was licking at my heels. You see, in what I considered a moment of brilliance I planned E2's birthday party on the same day. All the pertinent guests would be down our way anyway, so why not just have them all for lunch and birthday festivities? Genius!
Sadly, I did not consider soccer season. One nephew was missing the walk to play his game, his brother had a game later that afternoon, and Birthday Girl E2 had a game at 2pm.
And we crammed it all in that day.
Oh, we kept it as simple as we could, and Aunt Christine was out from Texas to serve as my party assistant, but still...crazy. Here's how my insanity played out for all involved.
The girls excitedly showed off the streamers (Gryffindor colors) and gold 'flippendo's' (decorations that resemble a graphic image from the Harry Potter computer games) to my parents and my aunt as they arrived. We headed to the walk with them caravaning behind us.
Once at the walk location, we signed-in, chatted for a while, and then walked (I would have sore shins for two days following) around the lake three times. After taking some photos and making a pit-stop at the restroom we jumped in the van and headed home to the party. See how easy that was?
Meanwhile, Aunt Christine picked up a veggie tray, cole slaw, and potato salad at the grocery store. My mother-in-law picked up an ice cream cake (special request that they make it the first of the day using newly washed utensils in a peanut-free area - Go Dairy Queen!), and waited at our house for the call telling her we were on our way home. Aunt Christine also went and picked up the nephew (not her nephew though) from his soccer game.
As we lit out from the walk, I called my mother-in-law so she could get the Papa Murphy'sTake and Bake pizzas started.
On the drive home I realized I'd forgotten to pull the crock full of roast from the fridge and put it in the crock-pot shell and turn it on...I was making Italian Roast Beef in case anyone decided to hang around until dinner.
We arrived home, trailed by my sister and her family (E2's Godparents), Aunt Christine and nephew were here, and the pizzas were ready. I cracked open the veggie tray and some chips and we all dug in - even before my parents arrived from the walk. Hey, you stay to chat it's your own lunch. I got the crock pot going on high.
Then we opened gifts.
Then we sang happy birthday and had cake.
Then E2 slapped on her soccer gear and she and Rob left.
Then mass chaos ensued.
The Grandparents, the other two E's and I were attending the soccer game. My sister and her family were leaving to attend other nephew's afternoon game. I threw some candy in their direction with a promise that they could come over some other Sunday and have some time to play with the girls. There was much jostling as all the soccer attendees decided whether they were driving or walking to the park.
I found the goalie shirt and the cups for the water jug that Rob needed for the game just before he called to ask me to grab money to pay their referees, and we all trooped up to the park.
We watched the game and wondered why the opposing team was even in our league as they showed impeccible skill.
We returned home and collapsed in the backyard while E1 and E2 (with her new skates) maimed and bruised themselves in an effort to learn to skate in the garage.
Earlier in the week, as I was dreading how rushed the day was going to be - fully aware that it was my own darn fault, E2 complained that she wished she didn't have to share her birthday party with the walk and her soccer game. The guilt, oh how it stabs!
I agreed with her and promised that next year we'd make sure her party had it's own day. It seemed like such a good idea at the time, you know? Yet another lesson learned.
Monday, September 17, 2007
We Rocked It!
Not only did we have more walkers on our team, but our team raised the most money once again. We're so thankful to our supporters!
Thursday, September 13, 2007
These Boots Are Made For Walking
We are walking in the ALS walk again this year, and would be thankful for a donation if you are so inclined or need another one for tax purposes. You can sign up here at our team page , or I'll accept Paypal through nrolvesATyahooDOTcom.
We're looking forward to the walk again this year. Our team has bragging rights to defend - we blew them away last year with our team's name (Amy's Army: A Boot in the ALS), our team's size, and the amount we raised. We mean to kick it up a notch this year!
Photos of our team from last year are at that link as well. Oh, go look - you know you want to.
Franks, people.
We're looking forward to the walk again this year. Our team has bragging rights to defend - we blew them away last year with our team's name (Amy's Army: A Boot in the ALS), our team's size, and the amount we raised. We mean to kick it up a notch this year!
Photos of our team from last year are at that link as well. Oh, go look - you know you want to.
Franks, people.
Friday, June 22, 2007
Warming Up The Boot
Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, is a fatal neuromuscular disease that can strike anyone without warning. Every 90 minutes someone in this country will be diagnosed with ALS and every 90 minutes someone will lose their battle against this devastating disease.
The Walk to D'Feet ALS® is The ALS Association's national signature event. Each year, nearly 100,000 patients, men, women, children and corporations join together to raise funds in support of internationally driven cutting-edge ALS research and community-based patient services programs. Now in its eighth year, approximately 150 Walks will be held around the country in 2007.
Click here to visit my personal page for Amy's Army: A Boot In The ALS.
Tuesday, June 05, 2007
Support The Registry
Dear ALSA Advocate:
Your advocacy efforts are making a difference! We now have won the support of more than 200 Members of the House who have cosponsored the ALS Registry Act (H.R. 2295) – just 15 short of a majority! Additional Senators also have cosponsored the Senate version of the bill (S. 1382), as we now have nearly 20 Senators as cosponsors. It is a testament to the effectiveness of your advocacy that we have achieved this level of support in such a short period of time. In fact, this is the quickest that an ALS specific bill has ever reached 200 cosponsors in the House – faster than in 2006 and faster than was achieved with the 24-month waiver legislation – legislation that ultimately became law.
A full listing of cosponsors will be available on the Advocacy Action Center of our website here . As of this writing, the list had not been updated by the Government Printing Office, which publishes cosponsor information electronically. However, we expect the full list to be updated by tomorrow.
ACTION NEEDED
We urge you to continue to reach out to your Members of Congress and request that they cosponsor the ALS Registry Act (or thank them if they already have cosponsored the bill). Your outreach will help us to win the support of a majority of the House and Senate. At the same time, it also is absolutely critical that we get the support of the Members of the House Energy and Commerce Committee, which has jurisdiction over the bill and which can determine whether or not the ALS Registry Act moves forward through the normal legislative process. Therefore, it is especially important that people living in the districts of the following Committee Members send letters TODAY! Most of the Members of the Committee already have cosponsored the bill, but the following Members have yet to add their support:
Arizona: Rep. John Shadegg (R-3rd, Phoenix)
California: Rep. George Radanovich (R-19th, Fresno, Turlock)
California: Rep. Jane Harman (D-36th, El Segundo, Wilmington)
Colorado: Rep. Diane DeGette (D-1st, Denver)
Illinois: Rep. Dennis Hastert (R-14th, Batavia, Dixon, Geneseo)
Indiana: Rep. Steve Buyer (R-4th, Monticello, Plainfield, Bedford)
Indiana: Rep. Baron Hill (D-9th, Jeffersonville)
Louisiana: Rep. Charlie Melancon (D-3rd, Gonzales, Houma, New Iberia, Chalmette)
New Mexico: Rep. Heather Wilson (R-1st, Albuquerque)
Oklahoma: Rep. John Sullivan (R-1st, Tulsa, Bartlesville) – NOTE: cosponsored in 2006
Pennsylvania: Rep. Joe Pitts (R-16th, Lancaster, Unionville) – NOTE: cosponsored in 2006
Tennessee: Rep. Marsha Blackburn (R-7th, Memphis, Clarksville, Franklin)
Texas: Rep. Ralph Hall (R-4th, Texarkana, Rockwall, Sherman, New Boston)
Texas: Rep. Michael Burgess (R-26th, Lewisville, Ft. Worth)
Virginia: Rep. Rick Boucher (D-9th, Abington, Pulaski, Big Stone Gap)
Please only contact these Members if you live in their district or serve families in their district, since Members of Congress are only responsive to their constituents. If you know someone who lives in any of these districts, please ask them to contact Congress.
Visit the Advocacy Action Center of our website here . To learn if you live in one of these districts and to send a letter directly to your elected officials. Together we can obtain a majority of the Congress as cosponsors and we can pass the ALS Registry Act during the 110th Congress.
If you have any questions or would like additional information, please contact the Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.
Thank You!
(The family of Beloved Aunt Amy thanks you as well!)
Your advocacy efforts are making a difference! We now have won the support of more than 200 Members of the House who have cosponsored the ALS Registry Act (H.R. 2295) – just 15 short of a majority! Additional Senators also have cosponsored the Senate version of the bill (S. 1382), as we now have nearly 20 Senators as cosponsors. It is a testament to the effectiveness of your advocacy that we have achieved this level of support in such a short period of time. In fact, this is the quickest that an ALS specific bill has ever reached 200 cosponsors in the House – faster than in 2006 and faster than was achieved with the 24-month waiver legislation – legislation that ultimately became law.
A full listing of cosponsors will be available on the Advocacy Action Center of our website here . As of this writing, the list had not been updated by the Government Printing Office, which publishes cosponsor information electronically. However, we expect the full list to be updated by tomorrow.
ACTION NEEDED
We urge you to continue to reach out to your Members of Congress and request that they cosponsor the ALS Registry Act (or thank them if they already have cosponsored the bill). Your outreach will help us to win the support of a majority of the House and Senate. At the same time, it also is absolutely critical that we get the support of the Members of the House Energy and Commerce Committee, which has jurisdiction over the bill and which can determine whether or not the ALS Registry Act moves forward through the normal legislative process. Therefore, it is especially important that people living in the districts of the following Committee Members send letters TODAY! Most of the Members of the Committee already have cosponsored the bill, but the following Members have yet to add their support:
Arizona: Rep. John Shadegg (R-3rd, Phoenix)
California: Rep. George Radanovich (R-19th, Fresno, Turlock)
California: Rep. Jane Harman (D-36th, El Segundo, Wilmington)
Colorado: Rep. Diane DeGette (D-1st, Denver)
Illinois: Rep. Dennis Hastert (R-14th, Batavia, Dixon, Geneseo)
Indiana: Rep. Steve Buyer (R-4th, Monticello, Plainfield, Bedford)
Indiana: Rep. Baron Hill (D-9th, Jeffersonville)
Louisiana: Rep. Charlie Melancon (D-3rd, Gonzales, Houma, New Iberia, Chalmette)
New Mexico: Rep. Heather Wilson (R-1st, Albuquerque)
Oklahoma: Rep. John Sullivan (R-1st, Tulsa, Bartlesville) – NOTE: cosponsored in 2006
Pennsylvania: Rep. Joe Pitts (R-16th, Lancaster, Unionville) – NOTE: cosponsored in 2006
Tennessee: Rep. Marsha Blackburn (R-7th, Memphis, Clarksville, Franklin)
Texas: Rep. Ralph Hall (R-4th, Texarkana, Rockwall, Sherman, New Boston)
Texas: Rep. Michael Burgess (R-26th, Lewisville, Ft. Worth)
Virginia: Rep. Rick Boucher (D-9th, Abington, Pulaski, Big Stone Gap)
Please only contact these Members if you live in their district or serve families in their district, since Members of Congress are only responsive to their constituents. If you know someone who lives in any of these districts, please ask them to contact Congress.
Visit the Advocacy Action Center of our website here . To learn if you live in one of these districts and to send a letter directly to your elected officials. Together we can obtain a majority of the Congress as cosponsors and we can pass the ALS Registry Act during the 110th Congress.
If you have any questions or would like additional information, please contact the Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.
Thank You!
(The family of Beloved Aunt Amy thanks you as well!)
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