Pennsylvania

Hi everyone! Just wanted to invite you to the Western PA Prematurity Summit on October 9th. It's from 7:30 am until 2:00 pm at the Western Pa School for the Blind in Oakland.

We are in need of mission families to attend and share their stories. Their will be speakers including healthcare professionals and preemie parents. We will also be breaking into small groups to discuss the impact of Prematurity and how we can affect change in various areas including healthcare, medical intervention, educational intervention, and spiritual outreach.

Please join us and feel free to pass this invitation along to anyone that may be interested! If you have any questions, email me at elmalloy1@yahoo.com.

Also, if you are interested in helping us plan events for Prematurity Awareness Month in November, please let me know! Thanks!

Th Pittsburgh Chapter of the MOD is hosting an event called the "Day of Gratitude" - a way to say thank you to all the doctors, nurses and staff that care for babies in the NICU. If you would like to participate in an event at a local NICU - West Penn, Magee, AGH, Children's, TIC or Mercy, please contact Kelly at KFraasch@marchofdimes.com.

Thanks!

Hi, I'm Jackie and I live in Morton. My daughter Lillian is a 26 weeker.She was 1lb 13 oz at birth and was 13 inches long. She was in the NICU at Bryn Mawr for 76 days. She is 13 months old now and doing very well. I would love to meet with other preemie moms!! I think we can help each other with advice and support. My email is guy1118@msn.com. If you would like to get together, email me after the holidays.
Jackie:smile:

State and local government officials will proclaim Feb. 7-14, 2007 as "Congenital Heart Defect Awareness Week." Every year families and professionals across the country will join together to celebrate Congenital Heart Defect Awareness Week. This is a week set aside each year to honor families of children and adults with congenital heart defects and disease (CHDs) and the professionals who work with them, and to cherish the memory of lives lost. By raising awareness, we can make a difference for future generations and find meaning in the challenges our children and adults face.

Pennsylvania Governor Ed Rendell, made a proclamation giving new meaning to the week of February 7th - 14th 2007. The proclamation named Febraury 7th - 14th 2007 Congenital Heart Defect (CHD) Awareness Week at the request of Pottstown, Pennsylvania resident Katie Busch, whose daughter suffers from two congenital heart defects was received.

“Valentine’s Day holds a special meaning. It’s not about flowers or chocolates; it’s about love and life. It’s time to honor the children and adults that are living with congenital heart defects and remember the ones we lost.” says Katie.

The proclamation said the observance of "A Day for Hearts: Congenital Heart Defect Awareness Week" helps to educate the public about CHDs and learn about possible treatment options and the importance of early diagnosis and intervention. The observance also recognizes the cardiac doctors, nurses and researchers that assist those affected by the condition and allows citizens to recognize those born with the defect and remember those who had CHD but have since died.

Busch asked that all Pennsylvania citizens learn more about congenital heart defects and support education and research so that children and adults with CHDs may lead longer and more active lives.

Each year, an estimated 40,000 babies are born in the United States with a congenital heart defect; CHDs are the most common birth defect and the number one cause of death from birth defects during infancy. Nearly twice as many children die from congenital heart defects as from all childhood cancers combined, yet research for cancer receives five times the funding. This is due in large part to the lack of awareness most people have about congenital heart defects.

I just read your post about the prematurity summit and I'm surprised I didn't hear about it in my son's backpack. He goes to the WPSBC. I would have liked to go to your gathering. (I have former 26-week twins Jacob--who goes to the school for the blind--and Hanna). Is there something next year maybe?

Hi there! I responded to your post by email first (saw it there before I logged on to Share...). Let me know if you need any more info!

Hi!
Just wanted to remind you to sign up for WalkAmerica!
www.walkamerica.org

The walk this year is April 29th at North Shore Park (a new location since Point State Park is under contstruction). I'm the chair of the Family Team committe for the walk this year, so if you have any questions or need any help, just let me know! We're planning activities for the Family Teams tent including a raffle of prizes!
We're also doing a t-shirt contest for the best family teams t-shirt and a jr walk (shorter than the standard walk) for those of you that want to participarte but that can't walk that far!

Look forward to seeing you at the walk!

The MOD is in need of ambassador families to share their stories....at WalkAmerica and other MOD events. We are looking for families in these areas to share their story of a child born premature, a child with a birth defect or families that may have lost a child. It's not limited to children, adults that was born premature or with a birth defect are welcome as well. We are in need in the following areas:

New Castle, Ellwood City, Titusville, Meadville, Somerset, Jefferson County, Johnstown, Bradford and Warren.

For more information you can contact me or Kelley Fraasch, Associate Director of Program Services - 412.391.3193 x115 or
kfraasch@marchofdimes.com

Thanks!
 

Erin Malloy
WalkAmerica Family Team Chair
MOD Mission Volunteer

Hi Erin,

I'm good pals with Kelley! If anyone calls tell her that James from SHARE says hello!

James

Hello Everyone-
This folder isn't getting any messages so I thought that I would put it out there and see if there are any families here on Share in the Philadelphia area.
Melissa

I was just wondering if there was any familes out there in the area on share that were from the area or around in the near the area or in lancaster area.

I am not from the Hershey area..I live just north of Philadelphia in Bucks County. I know the MofD at the Lancaster office and they are awesome though. There doesn't seem to be very many PA people on here...I would love to see more!!
Talk to you soon-
Melissa

I had met some great moms this past week from the Pittsburgh area who assured me that they will check this PA folder? So where are you ladies???
Melissa

We are near the hershey medical center, that's where my son was for his NICU stay and we stayed at the mcdonald house there during all of it. You don't see alot of pa people hear, but we also did the walk in april in lancaster. Nice to hopefully meet some pa moms.

Hi
I am in here in Pittsburgh and feel woefully out of touch. Is there a mailing list I can get on or meetings I can go to. My daughter (29 weeks) is now 21/2 and would like to connect with others and hopefully volunteer. As with everyone our time is not abundant but we had a great stay at Magee and would like to know how to help. Maybe with the Walk or Prematurity Awareness month?
Thanks.
Ellen
gawalte@duq.edu

Ellen-
Have you been in touch with your local office there in Pittsburgh. I was there a few weeks ago to talk to some NICU families and there are some wonderful Moms that are volunteering. The staff in Pittsburgh is AMAZING. Call Kelley Malcolm at the Pittsburgh office and tell her you are interested in volunteering. She will steer you in the right direction. I know that I met a few other moms who also were at Magee. I am pretty sure that they are doing a Day of Gratitude there at Magee in November that you may be able to get involved with. Tell them Melissa from Philly said HELLO!!
 Here is the chapter information
Western Pennsylvania Division
Address: 650 Smithfield Street, Suite 1180 Center City Tower
Pittsburgh, PA, 15222-3907
Phone: (412) 391-3193
Fax: (412) 642-9257
Hope it goes well--
Melissa Z

I, too, am mommy to a 29-weeker now 2 1/2. I'm in Williamsport (North-central PA). I haven't been on the site in some time. My daughter was born at Geisinger Medical Center/Janet Weis Children's Hospital and spent 40 days in the NICU. The hospital now has a MOD employee working in the NICU as a Family Support specialist. Last summer they implemented a Family Support committee made up of NICU staff (doctors, nurses, social workers, etc), parents of NICU grads, and personnel from area agencies such as Early Intervention. It's the only such program in the state. I, too, was anxious to do something to volunteer with the MOD and eagerly accepted the invitation to join the committee. We are doing great work for families with infants in the NICU. I feel like I am actually doing something that makes a difference. We met today in fact. We will be holding our first "Light a Little Star" event at the hospital next month (see lightalittlestar.org). We're in Danville, PA if you want to check out the link. Our event will be a mini-fundraiser and a NICU reunion event for babies discharged from the NICU in 2006. We were in 2005, but we'll be there since I'm on the committee. I'm looking forward to it. There are only a handful of these events in the country - I believe only 2 in PA. Maybe you could put-together an event like this in your area.
Andrea

Andrea-
That is wonderful that you are involved in NICU family support. I am involved with the MOD Chapter here in PA. I live just north of Philadelphia in Bucks County. We actually hosted the other Light a Little Star here!! It is such a cool event.
My husband was in Williamsport on business recently working the Little League World Series!!
Please let me know how the event goes..post some pcictures of it!
Melissa

I was so excited to find this folder. Melissa, I somehow missed catching up with you at Share Union. I live in Lititz, PA, just north of Lancaster. My family relocated here from CT earlier this year. We're in an apartment while we're house-hunting, and we'll most likely end up somewhere outside of Philly within a year or so - maybe around Exton/West Chester, depending on what we find.

So the Lancaster office has some things going on? Yay! I can't wait to get involved. I'm going to try to get in touch with them and see what sorts of things they need volunteers for.

-Amanda (neurobio/Annabelle's story)

Amanda-
How exactly did I miss you?? I was so busy crying and laughing that I seemed to lose track.
 I do not know where Lititz is located but I put in a few calls this morning and figured out who your staff would be. I do not know these people personally but I hear from a good source that they are wonderful.
But if you move to the West Chester area then..you will be in my division!! whoo hoo. I hope that you are able to walk there with us!
I would be happy to email this information to you.
Melissa

I'm in Pa. About an hour and a half outside of Philly.

An hour and half?? which way? I live north of the city. Are you involved with your chapter? I work closely with the office in the King of Prussia area. They seem to owrk with so many areas though that they are all over the place.
I am so happy to see PA getting some action in this folder!! whoo hoo
Melissa

Hey I live in Bucks county PA also. Where abouts are you? I'm in lower bucks, fairless hills actually.

Hello-
It is PJ's mom just under a different name now. You should be walking in the same walk site at my Team...Team PJ. It is wonderful site to walk at and this year they have planned some amazing things. Bob who runs the Walk at the community college is great.
If you need help getting involved please let me know. I would love to hear from you.
Melissa

Hi I am Linda...mom to Olivia born at 28 weeks, April 15, 2007....2lbs 2oz at Geisinger Danville, PA. I am wondering if there are any moms in NEPA that would like to start a preemie group, just some support for everyone, online support is great but nice to actually see the progress of these little miracles!!!

Sorry to take forever to reply. I've been sick and so has my 2 year old. Our first bout of Croup, It's been awful! He's finally doing better. I would love to help....my time is limited though. I babysit, have a 2 year old, work 1 night a week, and I am in school. Every time I write it out like that I feel like I do too much. Anyway...we'll be at the walk and I have started a family team. Jacob/Jaidon is our team name. My two year old is Jacob and Jaidon is the name we chose for the baby we lost in December. Anyway. Maybe I'll see you at the walk, I hope the turn out is as good as last year. There were a lot of people there.

Hi there,

I'm fairly new here, and recently lost my son. I have spent lots of time here, and am interested in meeting some people face to face... anyone in the Philly area?

Raelynda

Raelynda-
Hello and welcome to Shareland. I am sorry to hear about your loss. Share is amazing place to let your hair down and enjoy the people who have walked that mile in your shoes. I am sorry to say that there is not much traffic here in the PA folder(I check it out regularly). I currently live in the Philadelphia area and I work for the MOD with the Family Teams. I would be happy to put you in touch with local families but you will certainly be able to use Share to connect with people all over the country.
Melissa

Hi Melissa,

I would love to connect with some local families and even do some volunteering. I certainly love it here at SHARE, but would like to get involved with a local support network as well. Please feel free to e-mail me at raelyndat@gmail.com.

Thanks,

Rae

Hi,

I just got on this site and was trying to get more involved with MOD. I have always donated to MOD but now it is personal! I am the proud mommy of a 26 weeker. Parker was born Aug. 23, 2008. He is doing AMAZING and I know it's because of God and the amazing staff at Lehigh Valley Hospital NICU. I would LOVE to be more involved then just writing a check...can anyone help or give suggestions?
Mere