Pennsylvania CHERUBS Blog

Posts Tagged ‘CDH

I am proud to announce our get-together plans are finalized!

June 6th, 2009
12:00pm – sunset

South Park, PA, 15129
www.county.allegheny.pa.us/parks

Sunny Slope Pavilion
Sunny Slope Lane

The park includes many actvities for guranteed fun!

Activities available throughout the park include but are not limited to:

BMX Track
Golf Course
Wave Pool
Game & Nature Preserves

Our pavillion includes a small play area for children with swings and slides!

The PA Get Together is open to all members, but ask that only CHERUBS members and their families attend.

Drinks, Hotdogs and Hamburgers will be cookin’ but I do ask that members attending bring chips, deserts or a small side dish.

Please RSVP to Kate no later than May 27th via phone, 412-414-7073 or kcrawford@cherubs-cdh.org, or PM.

 

HOPE TO SEE YOU THERE!!!

cherub-logo

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The Holiday Inn Select San Antonio Airport
77 NE Loop 410
San Antonio, TX 78216
210-349-9900

http://www.hisairport.com

CHERUBS Room Rate is $89.00
CHERUBS Room Rate + Breakfast for 2 adults is $97.00

Breakfast is not free with your room! I’m sorry, we tried, but this is the best we can do! Feel free to bring milk, cereal, etc if you want to save money! I think kid’s do eat free in the dining room (per their site).

Rooms come with coffee makers, microwaves and mini fridges. There is a pool, restaurant, bar and fitness center. Free internet.

To receive the CHERUBS discount you *MUST* tell them you are CHERUBS members when you book the room and you must book it for July 22-25th or longer. We have to book 25 rooms to get our discounts and freebies so please, please, PLEASE stay at this hotel!!! It’s definitely the best value around anyway!!! 

Tentively, here’s our schedule:

July 22, 2009 – Check In
July 22, 2009 6:00 pm to 9:00 pm – Pizza Party and Introductions
July 23, 2009 8:00 am to 12:00 noon – Conference
July 24, 2009 8:00 am to 12:00 noon – Conference
July 25, 2009 8:00 am to 12:00 noon – Conference
July 23, 2009 – Check Out

That gives everyone the afternoons & evenings to go play.

Our guest speakers will speak on CDH Research, Genetics and Repair – including the head of the CDH Study Group, Dr. Lally. Round table discussions will be held for both parents of survivors and grieving parents.

There will be free babysitting during conference hours for the kids (volunteers needed!) and entertainment for them too (clown, magician, etc).

There is no conference fee, you just have to be a member of CHERUBS to attend!

You are responsible for your own lodging, food and other travel costs.

So far it looks like there will be about 150 in attendance!!! We have members coming in from Australia, Mexico, Great Britain, Canada and Italy as well!!! This is truly a CHERUBS INTERNATIONAL Conference!!! 

We hope to see you all there!!!

 

 

 

Conference Logo Items available at http://www.cafepress.com/cherubs/6448749

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I hope that you all had a wonderful holiday season!

 

We have started some new  groups on Facebook:

CHERUBS CDH Cause for Facebook – http://apps.facebook.com/causes/44070?m=7bf7bab2

Group to Stop The “Congenital Diaphragmatic Hernia Awareness” Trademark – http://www.facebook.com/group.php?gid=56377210497

CHERUBS Facebook Group – http://www.facebook.com/group.php?gid=56377210497#/group.php?gid=2243563143&ref=ts

CHERUBS Fan Club Page – http://www.facebook.com/group.php?gid=56377210497#/pages/Wake-Forest-NC/CHERUBS-Congenital-Diaphragmatic-Hernia-Research-Awareness-and-Support/37214172005?ref=ts

CHERUBS Australia Facebook Group -http://www.facebook.com/group.php?gid=56377210497#/group.php?gid=14672084879&ref=ts

CHERUBS UK Facebook Group – http://www.facebook.com/group.php?gid=56377210497#/group.php?gid=8375535821

 If you are an avid FB’er ( like me =] ) please be sure to check out groups!

 

::REMINDER::

We are still working together to fight the trademark of “Congenital Diaphragmatic Hernia Awareness”
To sign the petition: http://www.ipetitions.com/petition/cdhawareness

 

Help us help families!

On April 1, 2008, Elizabeth Doyle-Propst, CEO of Breath of Hope, Inc, filed a trademark request with the United States Patent and Trademark Office to own the rights to the phrase “Congenital Diaphragmatic Hernia Awareness” and a logo of a turquoise ribbon. This request was initially denied. It was resubmitted without the logo and went onto the Supplemental registry on September 17, 2008. Preceding and following this registration, Breath of Hope, Inc. filed complaints and sent threatening correspondence to other CDH organizations and families who used the term “Congenital Diaphragmatic Hernia Awareness”.

On December 4, 2008, CHERUBS filed a Petition to Cancel with the United States Patent and Trademark Office against the trademark “Congenital Diaphragmatic Hernia Awareness”.

It is our goal, along with 7 other CDH organizations and over 4000 CDH families and medical care providers who signed an on-line petition, that this trademark be canceled so that all people affected by Congenital Diaphragmatic Hernia be able to raise awareness without the threat of lawsuits. Congenital Diaphragmatic Hernia is a severe, and often deadly, birth defect that affects over 1600 babies each year in the United States alone and it would be extremely detrimental for one person or organization to dictate who can raise awareness for this birth defect. Because threats and complaints have been filed in the past and recently by Breath of Hope, Inc against organizations and persons using the term “Congenital Diaphragmatic Hernia Awareness”, we felt that we had no choice but to stand up for CDH families and to fight for their rights to raise awareness.

It is our sincere hope that the United States Patent and Trademark Office will see that it is in society’s best interest to cancel this trademark. We also hope that Breath of Hope, Inc and Elizabeth Doyle-Propst will refrain from any further attempts to harm members of the CDH community and will handle this matter in a mature, professional, non-vindictive and compassionate manner and put CDH families and their awareness rights first and foremost – as should be the behavior of any non-profit organization for families affected by Congenital Diaphragmatic Hernia.

http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2
http://ttabvue.uspto.gov/ttabvue/v?pno=92050284&pty=CAN&eno=2

Help us stop this trademark by signing our petition at: http://www.ipetitions.com/petition/cdhawareness/

http://www.compassionatefriends.org/

Every year since 1997 CHERUBS members have participated in National Children’s Memorial Day. This was started by Compassionate Friends in remembrance of all children lost and they have 1000’s of volunteers who work very hard to have this day passed every year. This includes children of all ages, including those not yet born, and includes children lost from all diseases, birth defects, accidents, murders, suicides – ALL children. Because we have several cherubs who were lost over 1 yr old, the Pregnancy and Infant Loss Day didn’t encompass all of our cherubs – National Children’s Memorial Day does. It also allow grieving parents to meet with other local grieving parents in their areas. This event occurs every year on the 2nd Sunday of December and proclamations by the Senate and President are signed. Proclamations are also signed by other heads of state around the world.

Each year, most of our grieving families light candles at 7:00 pm – with each time zone this creates a continuous light around the world for 24 hours.

Please visit our home page: www.cdhsupport.org to see our new design for NCMD. In memory of our angel cherubs. If you would like your cherubs added, please let us know.

Welcome to CHERUBS Pennsylvania’s CDH Blog site! I am Kate, the Pennsylvania Representative for CHERUBS. You can see my story under “Member Stories”. I am excited to keep members informed of new and exciting events with CHERUBS. If you would like to add anything; such as events in your community, your story or pictures, please e-mail me at kcrawford@cherubs-cdh.org!



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  • pacherubs: Would love to see you guys there is you can Kels!!
  • Kelsey: I hope that our family can come, but it is kind of a long drive. We are moving to Ohio in July, so maybe we will have to plan a trip to Ohio that week
  • pacherubs: You are so very welcome Kylene! I will keep you updated and look forward to hopefully seeing you at the get together!

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