Philadelphia FPIES Support Group

April 18 Meeting Cancelled

Unfortunately the meeting scheduled for April 18 has been cancelled.

Please sign up for our Newsletter or like our Facebook page to say informed about the next meeting and other upcoming events.

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April 18th Meeting

I hope your spring is off to a great start.   I love that the spring symbolizes so many new beginnings and am very excited to also celebrate our first support group meeting this spring!  Our first meeting is scheduled forSaturday, April 18 at 10 am.  We will meet at the on the 4th Floor of the Wood Building, Room 4320.  Unfortunately, there has been very little interest in attending this meeting and no RSVPs.  If you have been considering coming, now is the time to commit.  If there is not enough interest as of Thursday (4/16) at noon, I will cancel the meeting.

 Please CLICK HERE TO RSVP!

I really want this group and the in-person support group meeting to work for you.  We are definitely a work-in-progress and open to any suggestions. Please feel free to email us (phillyFPIES@gmail.com) or comment below with any suggestions for making the meetings more appealing or explanations about why you can’t make it to this one.  I am open to anything and welcome all feedback.  Also, don’t forget to like our new Facebook page so that you can stay on top of all upcoming events.  I also invite you to join in the discussion over there about how to make the group better.

Meeting Information:

Parking passes will be provided.  Please park in the garage at the Wood Building.

Please bring an ID in case you are asked to check in at the security desk and get a visitor’s pass.

Please feel free to contact Cathy if you are running late, have any questions, or if you get lost.

Children are welcome! I will provide some coloring pages (and Colorations crayons, which are typically safe) and activities.  However, there isn’t anything formal planned for the children at this meeting.  We will definitely discuss this at the meeting tomorrow and come up with the best approach for keeping children engaged and allowing parents to actively participate in the group.  Please feel free to bring toys and activities that you know your children will enjoy.

That being said, you do not have to bring your children.  You can decide what will work best for you.

Please try not to bring food.  There may be children at the meeting and it is impossible to know what foods are safe/dangerous for which kiddos so it is probably best to leave the food at home.  If you have to bring food for you little one, please be mindful of common FPIES triggers,  try to bring something easily contained, and remind your children not to share without checking with parents.

Please RSVP to the meeting.  This will give us an idea of how many people to expect.  It will ensure that we will have parking passes for everyone and that everyone is present before we start.  Even if you think you will be there, or are hoping to be there, please sign up so we know how many to expect.  You can click here to RSVP.

Bring your FPIES Questions!  Our medical advisors, Dr. Brown-Whitehorn and Dr. Cianferoni, will both attend the meeting.  They will be available to ask questions and provide input.  These are two amazing CHOP allergists who have volunteered to spend their Saturday morning helping us do what’s best for our children!

Bring your FPIES Expertise!  We are so lucky to have medical professionals who want to help us.  However, YOU are the FPIES experts.  Often living with FPIES is the best way to figure it out.  You’ve tried things that have worked and that haven’t.  You have so much to offer other parents.  You are the reason that this group will be successful.

I am so excited to meet other local FPIES families!  I am very hopeful for a great turn out tomorrow.  However, if you can’t make this meeting, please keep in touch.  The best way to stay informed is to sign up for our newsletter. I will send out meeting recaps as well as information about upcoming events and meetings.

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New Facebook Page

As you probably know, several FPIES-Specific Facebook groups already exist.  These are great resources that allow for families to get real-time support and answers from other parents.  The goal of the I-FPIES model of support groups (which we are following) is to provide in person support and knowledge-sharing to families living with FPIES.  Therefore, we were hesitant to establish a Facebook page for our group.  We did not want the group become Facebook-based and we wanted to be sure that information shared would be relevant and accurate.

However, due to the delay in getting the in person meetings up and running and also the benefits of Facebook for sharing information and starting conversations,  we have decided to start a Facebook Page for the support group.

The page will be used to post announcements about upcoming meetings and events.  It can also be used to share interesting FPIES-related articles and information and as a starting point for conversations.

Please “Like” the page so that you can stay informed about the group and other FPIES-releated information also get to know each other prior to the first meeting.

We will continue to send out newsletters, meeting announcements, and reminders via email and post to this website, but this is just another way for us to stay connected.

 

Like us on Facebook!

 

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CANCELLED!

I’m sorry that I had to cancel the support group meeting today due to a family emergency.

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Information about Tomorrow’s Meeting

The first meeting of the Philadelphia Support Group will be this Saturday, January 17, at 10 am.  We will meet at the Children’s Hospital of Philadelphia (CHOP main hospital) in room 1NW18.  

Parking passes will be provided.  Please park in the garage at the Wood Building.

Directions to CHOP

Map of CHOP Main Campus

Map of CHOP FIrst Floor

You will need to bring an ID and check in at the security desk at the Main Hospital to get a visitor’s pass.

We will plan to meet at the security desk and then we will be escorted to the room (because the room is hard to find) so please try to arrive at the security desk by 10:15 am.  Please feel free to contact Cathy (215-264-7571) if you are running late, have any questions, or if you get lost.

Children are welcome! I will provide some coloring pages (and Colorations crayons, which are typically safe) and activities.  However, there isn’t anything formal planned for the children at this meeting.  We will definitely discuss this at the meeting tomorrow and come up with the best approach for keeping children engaged and allowing parents to actively participate in the group.  Please feel free to bring toys and activities that you know your children will enjoy.

Please try not to bring food.  There will be children at the meeting and it is impossible to know what foods are safe/dangerous for which kiddos so it is probably best to leave the food at home.  If you have to bring food for you little one, please be mindful of common FPIES triggers,  try to bring something easily contained, and remind your children not to share without checking with parents.

Please RSVP to the meeting.  This will give us an idea of how many people to expect.  It will ensure that we will have parking passes for everyone and that everyone is at the security desk before we head to the meeting room.  Even if you think you will be there, or are hoping to be there, please sign up so we know how many to expect.  You can click here to RSVP.

Bring your FPIES Questions!  Our medical advisors, Dr. Brown-Whitehorn and Dr. Cianferoni, will both attend the meeting.  They will be available to ask questions and provide input.  These are two amazing CHOP allergists who have volunteered to spend their Saturday morning helping us do what’s best for our children!

Bring your FPIES Expertise!  We are so lucky to have medical professionals who want to help us.  However, YOU are the FPIES experts.  Often living with FPIES is the best way to figure it out.  You’ve tried things that have worked and that haven’t.  You have so much to offer other parents.  You are the reason that this group will be successful.

I am so excited to meet other local FPIES families!  I am very hopeful for a great turn out tomorrow.  However, if you can’t make this meeting, please keep in touch.  The best way to stay informed is to sign up for our newsletter. I will send out meeting recaps as well as information about upcoming events and meetings.

Please call (215-264-7571) or email (phillyFPIES@gmail.com) Cathy if you have any questions or concerns.

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First Meeting of the Philadelphia FPIES Support Group!

January-17

The first meeting of the Philadelphia Support Group will be this Saturday, January 17, at 10 am.  We will meet at the Children’s Hospital of Philadelphia (CHOP main hospital) in room 1NW18.  You will have to check in at the security desk to get a visitor’s pass.  They will be able to give you directions to the room.

This first meeting will be very informal. It will be an opportunity to build the foundation for the support that we will come to provide to one another. You’ll get to meet our medical advisors, Dr. Cianferoni and Dr. Brown-Whitehorn, and hear about their background with FPIES. It will also be a time for all of the families to get to know each other. I think you’ll find that we all have a lot of in common! I hope that you’ll walk away from the meeting with some new tips for living with FPIES as well as a few new friends who know exactly what you are dealing with everyday.

All are welcome! Please feel free to bring a spouse, a family member, a friend, or anyone else. I want you to feel comfortable and get as much as possible out of the group meetings. For some of us, that means finding a babysitter or having one parent stay home with the kiddos. For others, bringing the little ones may be the only way that you can attend. Please do whatever you feel is best regarding whether or not to have your children accompany you. We would much rather you attend with your children than not come at all!

We’d like to get an idea of how many people to expect at the meeting. Please use the link below to RSVP. It’s ok if you change your mind later, I know that life happens.

RSVP for January 17 Meeting

If you have any questions or concerns please contact Cathy at phillyFPIES@gmail.com or 215-264-7571.

Don’t forget to sign up for our newsletter to get updates about meetings, other events, and information.

Newsletter Sign-Up

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New Support Group for FPIES Families In Philadelphia

FPIES Ribbon

We are so excited to announce the formation of a new support group for Philadelphia-Area FPIES Families!

The group is part of the International FPIES Association’s (I-FPIES) initiative to create a new model of support for families challenged by FPIES.


It’s time for MORE: More information, more insights, more support.

I-FPIES invites you to jump beyond the internet
into a real time, real world group that offers
emotional support and solid medical insight.


The goal of the I-FPIES Support Groups is to provide families with the opportunity to meet regularly and share their stories. They also offer collaboration with medical professionals and guest speakers, all committed to helping you traverse this challenging diagnosis.

Medical Advisors

The Philadelphia-Area FPIES support group will have two co-medical advisors who will serve as the liaisons between I-FPIES, clinical research, and the families and caregivers dealing with FPIES. At least one advisor will be present at every meeting to provide general clarification and answer both general medical and scientifically based questions. I am so excited that Dr. Antonella Cianferoni and Dr. Terri Brown-Whitehorn have agreed to be our medical advisors!  Both are allergists at Children’s Hospital of Philadelphia and have extensive experience when it comes to treating children with FPIES.  Dr. Brown-Whitehorn and Dr. Cianferoni have worked closely with I-FPIES to further research and dissemination of information about FPIES.   Dr. Brown-Whitehorn serves on the I-FPIES Medical Advisory Board.

Parent Facilitator

Each FPIES support group is facilitated by an FPIES parent who will be the liaison between the medical advisor and the families and caregivers dealing with FPIES. The facilitator will coordinate regular support group meetings, including setting  topic for discussion and coordinating guest speakers.  Cathy Bykowski has volunteered to facilitate the Philadelphia-Area FPIES support group!  Her son, who is now 27 months old, was diagnosed with FPIES when he was about 6 months old.  The past almost-two-years have been quite a journey!  They have endured the discovery of 7 FPIES triggers (dairy, soy, rice, oat, egg, shellfish, and coconut) but have also overcome so much.  She spends much of her (very limited) spare time researching FPIES and sharing information about FPIES, safe recipes, and her family’s story on her blog.

IMG_2738

Meeting Information

The Philadelphia-Area FPIES Support Group will meet quarterly on the campus of the Children’s Hospital of Philadelphia (CHOP).  The first meeting will be Saturday, January 17, 2015 at 10:00 am!  It will be a general informational session and an opportunity to brainstorm our goals for the year as well get to know each other.

We are still working out the details but will be sure to let you know as soon as everything is official.

Mailing List

The best way to stay up-to-date about what’s going on with the group is to join our mailing list.  We will send out reminders about upcoming meetings and events as well as share useful information and meeting recaps.  The mailing list will only be used by our local support group.  Please sign up below so that you can be the first to know the details of our inaugural meeting!

Click Here to Subscribe to the

Philadelphia Area FPIES Support Group

Mailing List

If you have any questions about the group or would like to volunteer to help out, please email Cathy at PhillyFPIES@gmail.com.
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