First annual Angel Day

Our First Annual Angel Day is planned for July 30th 2010.

On July 30th, 2009, Avery John Rauen left to be with the angels in the UNC Butterfly garden from his parents, Jared and Meghan's arms. His beloved family and amazing medical team looked on. He had fought heroically for 107 days against gastroschisis and his life has provided much unity, support and hope for a disease affecting many babies and many families all over the world.

We plan on honoring Avery and other gastroschsis survivors and victims every year on July 30th to raise awareness for the birth defect now affecting every 1 out of 2500 births in the US.

The event is to promote support and raise awareness of the members of your local community affected and how simple little gifts can mean so much.

There are events planned (location TBA) for the RDU area. They are listed below along with suggestions for events to promote, sponsor and put on in your area.

• Blood/Platelet/Plasma drive at area hospitals with NICU's (contact Meghan for NC area hospitals)

1 adult donation of plasma or blood saves 12 babies and gastroschisis babies require much during their surgeries.

• Please support the Ronald McDonald House by purchasing a Happy Meal or bringing your change in to a location or our planned potluck/picnic on the 30th.

The Ronald McDonald house provides access for parents to their children while they struggle through difficult diseases. However, they need your support! The houses tend to fill up quickly, while babies come in and have families who struggle to be by their side.

• On July 30th, Location TBA, at 5:30/6pm we will have a potluck/picnic.

Some food will be provided but please bring a dish to share.

• At 7pm we will do a butterfly release. (Suggested $2 donation to be part)

• At 8pm EST we're asking all families to light a candle or pause for a moment of silence to honor all survivors, victims, expecting parents and families enduring the journey.

You can also:

Promote and come up with a walk/marathon

Create a musical/family event

Promote your own blood/plasma drive at the hospital where your child was

Restaurant Promotional Event

If you would like to donate, get involved, volunteer your time or need help with suggestions please email us at meghanhall@averysangels.org

11,000 babies born today, 4.4 were born with gastroschisis. Let's do something about this. Let's take a moment to honor those families.

We hope you'll join us in our celebrations or have your own all over the world!

Love and blessings
Avery's Angels


- Contact me at meghanhall07@gmail.com to get involved or more info about Avery's Angels

Find us on facebook under pages and causes; Avery's Angels

Follow our progress on Twitter @4gastroschisis

Meeting today!

I'm heading out early from work to meet with the hospital staff at UNC.

I'm so excited to see them again. They're amazing and even though our journey with them wasn't always the most fun, I can say that they were very capable and I trust them with the life of all of my children!

We'll be collecting information for our websites and the group has been gathering thoughts on lay out and links and so forth. I'm so excited to start seeing what Chris and Herb put together!

It's never to late to submit your imput and suggestions and concerns! We'd love to hear from you!
meghanhall@averysangels.org

GET PEOPLE!!!

Let's get linked! Please take the challenge to get people invited. We are on the eve of posting our website and we need volunteers and help! 1 out of every 5000 in the US means you know someone who has been affected! Get the word out there!
Twitter 4gastroschisis
Facebook Pages/Causes Avery's Angels NPO
Forums forums.averysangels.org
blog angelaverysmomy.blogspot.com

COME ON! LET'S DO THIS!

Hey friends!
I wanted to update you on several things:

1) lawyer has put together our bi-laws and NPO information, our Tax Id information, and INC info. We are just waiting for the process to get through. It will take a wee bit of time so be patient! This will help people feel more comfortable to donate. And US folks and donate upto April 15th for tax deduction!

2) Meeting on the 25th is confirmed. I'm still taking questions and concerns, things you would like to ask the medical community, things you would like to see done, etc for content for the site. The purpose of gastroschisis.org is to present information to parents and the community that is medically sound and approved. We want to take away the overwhelming scattering and plethora of information out there.

Also, with the developments that gastroschisis has made, it is no longer safe to counsel parents that the prognosis is 30-60 days in the NICU with a silo surgery. 60-80% of the babies can be in the hospital now for 60days to 4 months plus, have multiple surgeries and may return home with bells and whistles (ostomies, central lines, GI tubes and feeding aversions, etc.) We need to prepare our parents for this. They also need to make sure that discussion has been made with medical practitioners on trying to salvage as much intestine as possible for long term care and increase in survival. You probably are aware none of this is out there in one place for parents to have access too.

Mothers have expressed interest and need for pediatrician to be on board to supply information on feeding and alternative foods for babies (issues with formulas and breast milk) as well as developmental issues.

We have a lot to have the public gain access too. My hope is that eventually we gain enough info and credibility that hospitals and doctors can use the site to educate families. That's the credibility and comprehensive structure I'm after.

3) Support networks. We will need funding to help parents with NICU induced expenses (bills, medical and misc. while parents are out of work) Child care, and in the unfortunate case, funeral help. No parent should be forced to make long term arrangements that don't bring them any comfort. We will also need funding to help local chapters raise up all over the nation and globe. I want the support to be hands on and accessiable. There are up to 2-3 babies at UNC at one time going through treatment, so these parents are floating around the NICU and not even knowing that there's another person going through the same thing. Or that there are people out there that can lend an ear, support, a hand or a shoulder. I love that we have a global connection everywhere for parents to post stories, I think that's very wonderful and unites people. But I want to make it more human and provide parents with any type of support they may need therefore we need:
Volunteers for fundraising (medical research, support, general)
Volunteers to be parent-to-parent support
Volunteers to help establish medical links in each community
Volunteers to help educate and raise awareness
Volunteers to eventually help get a chapter of Averys Angels setup nationally and globally.

Spread the word. As soon as we get content and it's all been approved by the medical communities and the proper people it will be posted to gastroschisis.org and averysangels.org. We intend on updating and expanding daily. So don't think what we gather will be final!

Spread the word. One out of 5,000 babies in the US is affected by gastroschisis. My listserv should be longer and I want it to be. I want to reach out to parents from the 70s and 80s who lost their babies to provide them some support and hope that their angel has not been forgotten and great strides have been made to help in all angels honors and for all gastroschisis parent anywhere.

Don't forget our twitter @4gastroschisis, http://forums.averysangels.org/, our Facebook pages/causes Avery's Angels NPO and my blog angelaverysmommy.blogspot.com all ways to get information on what we're about, what we've done and what we're doing now!

Love to all, have a great weekend, contact me at any time! meghanhall07@gmail.com
Love and blessings
Meg

Getting involved NOW

What we need help with now is several areas:

People who will be interested in starting the outreach/support/awareness groups in each state once we get the NPO filed for in NC it will be much easier for us to do this. (Our plans are to start after NC in CA)

People who can volunteer time for support.

People who have connections to medical facilities by state with gastroschisis experience. (The gastroschisis.org site will have a comprehensive map of hospitals and doctors offices with experience in these cases. We need to be making those connections now also for support.)

Any information on places and doctors doing research into causes. Lots are doing research into repair.

State listing for Family Support Networks and connections to (the one in NC will be training all of our parent-to-parent support volunteers. I'd like to have this same personal training offered in some shape or form per state.)

All of your gastroschisis stories, information, pictures.

Fundraising ideas. Funds.

Questions, comments and concerns.

Please email me or post on the forum http://forums.averysangels.org or email me directly at meghanhall@averysangels.org or info@averysangels.org

Forum!

We have a forum now to post questions/concerns and suggestions. You can do so for our general mission and progress or also medical questions for me to shuffle through to the Jan 25th meeting at UNC Hospitals.

http://forums.averysangels.org/

Again the meeting is on Jan. 25th with Dr. Helmrath pediatric surgeon, Dr. Marshall attending neo-natologist, the director of large donations Cutler Andrews, the OBGYN coordinator for high-risk pregnancies Maya Lindley, Dr. Helmrath's pediatric surgery nurse practitioner and the president elect of APSNA (American Pediatric Surgery Nurses Association) Lynne Farber, Tara Bristol director of the March of Dimes at UNC Hospitals at UNC Hospitals. I plan on discussing content for the site and collecting their thoughts on the direction we need to be heading, collecting resources, basically picking the brains of everyone who is deep into the care and current research of gastroschisis.

I will be taking any questions anyone else may have to them as well as well as your thoughts on the medical poriton of the site which again will be gastroschisis.org Please either post them on the forum or email me directly at meghanhall@averysangels.org or info@averysangels.org

Wonderful open opportunity

Dear friends-

I have a scheduled meeting with Dr. Helmrath pediatric surgeon, Dr. Marshall attending neo-natologist, the director of large donations Cutler Andrews, the OBGYN coordinator for high-risk pregnancies Maya Lindley, Dr. Helmrath's pediatric surgery nurse practitioner and the president elect of APSNA (American Pediatric Surgery Nurses Association) Lynne Farber, Tara Bristol director of the March of Dimes at UNC Hospitals on January 25th. I plan on discussing content for the site and collecting their thoughts on the direction we need to be heading, collecting resources, basically picking the brains of everyone who is deep into the care and current research of gastroschisis.

Dr. Helmrath, if I haven't already told you, receives 5 million a year from the government in grants to study gastrointestinal repair. It goes without saying that this is a key part of the success and future success of gastroschisis babies. Dr. Helmrath also performs the bulk of gastroschisis surgeries here at UNC Hospitals which currently sees the highest number of gastroschisis patients in the country right now, between 50-100 babies a year. If there is anyone to ask it would be him. Please please, I'm opening up this opportunity to anyone who needs questions asked or would like to request specific information or resources from him.

I want you all to compile lists of things you may want me to ask or have covered at the meeting. It is very rare that I can collect this particular group of people together in one room. So I want it to be as thorough as possible. Spread the word amongst your friends and groups so we can compile and sort through all that needs to be. I think the next time I will be able to do this is sometime in March/April. Email me your questions/suggestions/comments at meghanhall07@gmail.com

The Family Support Network of NC has generously offered to train all of our NC volunteers to able to provide parent to parent support. I am hoping to go through the training in February or March. It is also my intention of partnering with them to see what we can set up for this training to be accessible to others in other states. Please email me ASAP if you would like to be involved in this!


This is our progress so far. I am desperate to get ahold of some of you so in your spare time please contact me, any time of day or night via email again at meghanhall07@gmail.com

Love to all I'm so excited about our progress!