April 19, 2010 - "CDH Awareness Day"

CHERUBS hereby declares April 19, 2010 as "CDH Awareness Day" - as today it was granted back to the people it truly belongs to - CDH families and researchers!

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


TTAB Ruling - April 19, 2010

The beginning of it all.  The initial application to own a trademark on "Congenital Diaphragmatic Hernia Awareness", filed April 1, 2008 


http://tmportal.uspto.gov/external/portal/tow?SRCH=Y&isSubmitted=true&details=&SELECT=US+Serial+No&TEXT=77436855#


Note that the turquoise ribbon and proclamations are included in the application to own a trademark on "Congenital Diaphragmatic Hernia Awareness".   

 There is an additional trademark on "Congenital Diaphragmatic Hernia Awareness DAY", which was filed December 29, 2008.  It also includes the turquoise ribbon.  http://tmportal.uspto.gov/external/portal/tow?SRCH=Y&isSubmitted=true&details=&SELECT=US+Serial+No&TEXT=77640674#




CHERUBS petition to the TTAB Court (supported by several CDH groups and 1000's of families) to cancel the trademark to keep CDH Awareness free for all:

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

Recent response from the TTAB, which caused Breath of Hope to relinquish the trademark.

After 2 long years, Breath of Hope did the right thing:

Today, April 19, 2010, "Congenital Diaphragmatic Hernia Awareness" is given back to the CDH community.  Owned by no one, trademarked by no one, a date not specific to any person or organization.  While most raise CDH awareness every day, today is the first day in 3 years that we can do so without fear. 


Let's all move forward!




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From BoH's Blog - 

"The Senate passed S. Resolution 204 for March 31, 2010 to be Congenital Diaphragmatic Hernia Awareness Day please click here to see this - this was done unanimously on April 14, 2010. Breath of Hope and other organizations have faced fierce opposition but this is proof that good prevails.

Since we started this campaign in 2007, there have been six entities that have started conducting medical research to benefit Congenital Diaphragmatic Hernia. Awareness leads to medical research that will lead to answers and treatments."

Does anyone know of anyone who opposed the day?  We know 1000's who opposed the TRADEMARKS on CDH Awareness and CDH Awareness Day and they opposed the use of the proclamations in those trademarks that were used to threaten and harass others.  And those who opposed the "ownership" of the day that allowed only select groups to participate.  But we don't know anyone who would oppose a day that may bring about CDH Awareness.  Did we miss something?

Also.... does anyone know those "6 entities that started their research as a result of this day"? I know of 1 that started thanks to a donation from CDH families in St. Louis on that day... but if we're missing 5 others, someone please let us know so that we can get families to join in on research. We do know of 5 others (and more) that are conducting CDH research - but knowing those researchers, we're sure given the fact that most signed the petition against the trademarks and they were researching CDH long before BoH came into existence... they might be understandably insulted by that statement. 

"faced fierce opposition but this is proof that good prevails"... we suppose CHERUBS is the "opposition" because we dared to speak up against the trademarks.

"Good" would be doing something good for the sake of helping others without any other motives, without causing or threatening harm to others.  That is most peoples' definition of good anyway.

Will CHERUBS participate in helping with the 2011 bill for the day?  Probably not.  It's still trademarked.  We may however put aside April 19th as a day to celebrate the fact that CDH Awareness is no longer trademarked and free for everyone to use without fear again.  1000's of families and researchers fought for that and it should be celebrated.

Sincerely.... congratulations to BOH on getting the bill passed. We do support all CDH awareness projects, even if we can't / chose not to participate in them. A lot of CDH families worked hard to write letters to get the day passed and it is a fete to have a unanimous vote by our politicians to help these babies. BOH and the families involved should be proud of their accomplishment.

And we do extend an invitation to BOH and all other groups to join in to help with the CDH Research Bill. It is not trademarked.  Our only mission is CDH Research and helping these babies.

 

CDH Awareness In The News - ABC2 News in Maryland

http://www.abc2news.com/news/local/story/Raising-Awareness-For-Rare-Disease/gNWbJ7dZEEui7QRclGlXGg.cspx

Brooke Sroka is a 2 year old CDH survivor in Maryland who participated in our Save the Cherubs campaign with her photographer mom, Mandy Sroka.   The media was alerted to the campaign and they chose to interview the Srokas, who did an AMAZING job in raising Congenital Diaphragmatic Hernia Awareness!!!

WTG Sroka family!!!!!!!! :)

Register Your Hotel Room For The 2010 CDH Conference By April 13th!

http://www.cherubsconference.org

Deadline to register for the hotel discount is TOMORROW, April 13th! You can still register later at full price.

This is going to be an AMAZING conference for CDH families with so much info and support and it's close to Disney and Universal!  What better vacation is there than that? :)

 

CHERUBS 2010 International Member Conference

May 13 - 16, 2010
Orland, Florida

Summer Bay Resort Holiday Inn Express

Orlando, Florida

About Our CDH Conference:

Expect to learn a lot about Congenital Diaphragmatic Hernia!   Meet new friends, see old friends and participate in research for various hospitals.  

For safety and privacy of our members, you MUST be a member of CHERUBS to attend.  You may register for free at http://www.cdhsupport.org/members

Children are welcome and babysitting services will be provided during conference hours.   Volunteer babysitters are needed and all parents who request babysitting are obligated to donate a minimum of 1 hour of volunteer time per child to help out.

The hotel offers free breakfast and shuttle to and from the amusement parks.

Families are responsible for all other meals and all transportation, accomodations and entertainment.

CHERUBS does not charge a conference fee.

Many families of survivors are eligible for grants to cover travel expenses to medical conferences.  Ask your child's social worker for more information.

Registration:

Make sure to register with us so that we can expect you!   Registration deadline is May 1, 2010.

CHERUBS has a block of 20 rooms reserved at a discount rate at the Summer Bay Resort Holiday Inn Express.   They are available on a first come, first serve basis.    To book at $65.00 per night, you must reserve a room by April 13th.

If you are coming alone and would like to share a room with another member, visit our forums to find a roommate.

Conference Schedule:

Thursday, May 13, 2010

7:00 - 9:00 pm - Pizza Party and Introductions

Friday, May 14, 2010 - CDH Support

8:00 am - 8:45 am Round Table Discussions Session 1

• For CDH Survivors (choose one)
• Physical and Occupational Therapies
  
• Feeding Issues
  
• For Grieving CDH Families (choose one)
• Faith & Doubts In Grief
  
• Dealing With Anger
  

9:00 am - 9:45 am Round Table Discussions Session 2

• For CDH Survivors (choose one)
• IEPs for School Age Children
• Early Intervention for Infants & Toddlers
• For Grieving CDH Families (choose one)
• Grief and Siblings
• Dealing With Special Days
  

10:00 am - 10:45 am Round Table Discussions Session 3

• For CDH Survivors (choose one)
• Dealing with Family & Friends
• Marriage & Having a Special Needs Child
• For Grieving CDH Families (choose one)
• Dealing with Family & Friends
• Marriage & Grief

11:00 am - 11:45 am Round Table Discussions Session 4

• For CDH Survivors (choose one)
• Pregnancy After CDH
• Helping Other CDH Families
• For Grieving CDH Families (choose one)
• Pregnancy After CDH
• Creating Something Good From Sadness

Saturday, May 15, 2010 - CDH Research

8:00 am - 11:00 am - Guest Speakers On Current CDH Research Studies

8:00 am - 9:00 am  - Meaghan Russell and Mauro Longani from Mass General

9:00 am - 10:00 am  - Speaker Information coming soon!

10:00 am - 11:00 am  - Speaker Information coming soon!

11:00 am - 12:00 pm  View Research Booths, Sign up for CDH Research Studies

Sunday, May 16, 2010 - CDH Awareness

8:00 am - 8:30 am - "Current and future global efforts to raise CDH Awareness" by Dawn Williamson, President & Founder

8:30 am - 9:30 am - Group discussion on how we can raise more CDH Awareness as a community

9:30 am - 10:30 am - Group disccussion on how families can raise CDH Awareness in honor and in memory of individual cherubs.

10:30 am - 11:00 am - Saying Good-byes

 

CDH Event Calendar

There are so many Congenital Diaphragmatic Hernia Awareness and Fundraising Events going on this year!!!   Conferences, Get-togethers, Picnics, Car Washes, Car Rallies, Zoo trips and more!     Not only through CHERUBS but through other CDH groups and families as well:

http://www.cdhcalendar.org

If you would like us to post your event, please contact us at events@cdhsupport.org   We are happy to post any event for any group that is a member of ACDHO, any March of Dimes walk or any CDH related event that benefits a hospital.

Projects, Webpages, FB and Blogs

We have been BUSY at CHERUBS!  Aren't we always?  :)    We always have tons of projects going on and going in a million directions at once!  But it's all worth it to provide all the services that we do!  :)

To keep everyone updated on what's going on at CHERUBS with various projects, we have several different blogs and FB pages, plus forums on our site as well!   Not to mention web sites too!   We are slowing growing and going through each project or service and updating the web with news.  Bear with us as do this, while also updating our sites.   So far, we have the following up:


CHERUBS - If you haven't seen the new site, you must go check it out.  There are 1000's of pages of Congenital Diaphragmatic Hernia Research, Information, Awareness and SUPPORT!   It's a one-stop shop for all things CDH.

• Site - http://www.cdhsupport.org
• Forums -  http://www.cdhforums.org
• Blog - http://cdhsupport.blogspot.com
• FB Page -  http://www.facebook.com/cdhsupport
• Twitter - http://www.twitter.com/cherubs
• Myspace - http://www.myspace.com/diaphragmatichernia 

International CDH Conference - Our first Congenital Diaphragmatic Hernia Conference happened in 2000 in Orlando.  This year, we're back to Orlando on May 13-15, 2010!   Come meet other CDH families, talk to researchers, learn about Congenital Diaphragmatic Hernia, participate in round table discussions and have FUN!   We have something for all CDH families - survivors and grieving!!!   This year we welcome Mass General, DHREAMS CDH Study and Sick Kids Toronto as guest speakers!   And we happen to be near the happiest place on earth - Disney World!!  :)

• Site - http://www.cherubsconference.org
  
• Forum -  http://www.cdhsupport.org/members/viewforum.php?f=236
• FB Page -  http://www.facebook.com/cdhconference
• FB Event Page -  http://www.facebook.com/event.php?eid=274488979498

Save the Cherubs Campaign - Our new 2010 CDH Awareness Campaign!   We have over 20 models currently taking shoots and plan to have over 100 CDH families participating by the end of the year.  With flyers, posters, billboards and newspaper articles and tv interviews, that's A LOT of awareness!!!!   Our goal is to Save the Cherubs and spread awareness to promote resesearch to save the lives of babies born with CDH!

• Site - http://www.savethecherubs.org
• Forum -  http://www.cdhsupport.org/members/viewforum.php?f=238
• Blog - http://savethecdhcherubs.blogspot.com
• FB Page -  http://www.facebook.com/savethecherubs

CDH HOPE Totebag Project - Congenital Diaphragmatic Hernia H.O.P.E. (Helping Other Parents Expecting) Tote Bag Project.   Our project has reached over 100 CDH families since September!   This national project includes donations from CDH families to CDH families, making it truly a joint effort helping Congenital Diaphragmatic Hernia families.

• Site - http://www.cdhhope.org
  
• Forum -  http://www.cdhsupport.org/members/viewforum.php?f=237
  
• Blog - http://cdhhope.blogspot.com/
• FB Page -  http://www.facebook.com/cdhhope

CHERUBS Angel Ball - October 30, 2010 at the Hilton Durham in Durham, North Carolina.  Celebrity guests, local radio star MC, live band, casino, silent auction and more at this year's "Masquerading Angels" Ball!

• Site - http://www.cherubsconference.org
  
• Forum -  http://www.cdhsupport.org/members/viewtopic.php?p=58277
  
• Blog - http://cdhangelball.blogspot.com/
• FB Page -  http://www.facebook.com/cherubsangelball
• FB Event Page - http://www.facebook.com/event.php?eid=308757910449&ref=ts

CDH Fundraisers, Research, Grants and the future of CHERUBS

Note from Dawn:

Dear Members and Friends,

We'd like to welcome to our Fundraising and Grant Committees, Gina Cappola Della Porta!   Gina is an experienced grant writer currently working for a local university's research department.  She is now heading up our  Fundraising and Grant Committees and working on several events and grants.   She is a volunteer but our goal is to hire her full time in the near future to secure funding for CHERUBS and all of our services.  In the month she has volunteered for us, she has secured the Angel Ball, helped us find funding for the Save the Cherubs Campaign and started an NIH grant collaboration with Mass General for CDH research.   Gina has no personal connection to CDH - she saw a post about our charity and felt guided to join our cause through the goodness of her heart.  She is an angel!  Such an angel that I hesitate to post her last name because we know she'd be targeted by other charities and who could blame them?!   But Gina has worked with us and we know she's dedicated to helping CHERUBS and cannot be swayed!   We are so very excited and grateful to have her on board!  :)


CHERUBS has done a lot over the past 15 years with limited donations and only volunteers who are busy working other jobs and/or taking care of their cherubs or grieving their cherubs.   I, myself, have donated over 25,000 hours to CHERUBS through all sorts of life's hurdles including taking care of a very handicapped cherub and then losing him at 6 yrs old and during my own grief - and while working another job and running my own company.   CHERUBS deserves 100% undivided attention by people dedicated to our services and research for 8 hours every day!   We can only do so much with a volunteer staff.  It's time to move forward and to expand!    It is time for a full-time staff.  Let me make this very clear - donations will NEVER pay for salaries at CHERUBS, even though that is common practice at most charities.   Salaries will be paid for by grants or designated funds.  

Our goal, through our various projects, fundraisers, donations, Congressional Bills and grants, is to have an office, 3 full-time employees, and all 5 CDH funds full by the end of year, with a focus on more support services, financial assistance to families and $100,000's to CDH Research.   It's a big goal, but we've done more and gone farther than anyone thought a group of CDH parents could!   We won't stop helping CDH families and searching for the cause, prevention and best treatments of CDH and with a full-time staff, we can do so much more!!!!!   

Our dream (shared no doubt by all CDH families) is that by 2025, we hope to fund the nation's first CDH hospital complete with surgery, ECMO, in utero treatments, research, long-term care clinincs, genetic research, feeding clinics, support systems, financial aid and rooming for parents and siblings at the hospital so they remain together - staffed by the country's CDH leading experts.   CHERUBS wants to do for CDH what St. Judes does for Pediatric Cancer.   How much will that cost?  An astronomical amount of money!    Yes, we dream BIG, but we're determined and focused and I believe that we have the volunteers, members and CDH researchers to make this dream come true!

That's the BIG focus - the 25 year plan - but we still have our current services, CDH support, CDH research and CDH awareness to focus on too!   We need help to do all that we want to do and to do so much more!   We are working on MANY projects and fundraisers to fund all of our services and are always on the lookout for more CDH fundraising ideas and volunteers! Any ideas?

We have an on-line store, sell bracelets, books, CDH Awareness kits, cookbooks, calendars, 1000's of items through Cafepress and Zazzle. We've had events, formal balls, golf tournaments, car washes, 5k's, car shows, road rallies, raffles, etc. 

What else can we do? Ideas?

We like to be ORIGINAL at CHERUBS! :) We like to be respectful and we don't like to infringe on other charity's ideas (CDH charities or local charities), we like to lead the way! We're creative here and love watching other charities learn from our ideas. But it's hard always coming up with new ideas!

We are in an area in NC that has A LOT of charities who all have a lot of events! Repeating or holding the same event or fundraiser = competing for donations... we won't do that. And we have 2 Ronald McDonald Houses that have many events that we are very respectful of (selling shirts for nights, dinners, walks, games, etc). We also don't like to do events or fundraisers that could mislead people or not sell enough tickets so the prize isn't so big, etc... that's hard in this economy! Plus, we're in the Bible Belt, we have a lot of laws and rules on fundraisers in NC that a lot of states don't, which makes it harder. And with the economy as it is, we don't like to sell expensive stuff... our $50 Angel Ball tickets are as high as we go... and attendees get A LOT for their money! Like I said, it's HARD coming up with new ideas!!!!

We also have programs and events that are NOT fundraisers... just services to help families and raise awareness, such as our CDH HOPE totebag project, Adopt a Hospital project, Save the Cherubs Project and our CDH Conferences.

If anyone has ideas, please let us know! And PLEASE join the fundraising committee!!!! :) 


Thank you everyone for supporting CHERUBS and CDH Families!


Sincerely,
Dawn Williamson
CHERUBS President & Founder
CDH Mom

2010 Triangle March for Babies

Join CHERUBS as we represent the CDH community and help to raise awareness of birth defects in the Triangle March for Babies benefitting the March of Dimes.

http://www.marchforbabies.org/team/t1364045

CHERUBS on Twitter

CHERUBS has been on Twitter for quite a while!  Don't forget to follow us and retweet CDH news!

http://twitter.com/cherubs/

This is a quick, easy and free way that you can help to raise Congenital Diaphragmatic Hernia awareness and to promote a great charity, CHERUBS!

Feel free to steal our profile background or any of our graphics for your twitter page!