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Thread: Raising awareness by running the marathon... who do I talk to?

  1. #1

    Raising awareness by running the marathon... who do I talk to?

    I was reading the 2013 newsletter (us2.campaign-archive1.com/?u=d4fef673c3618e73e21957cbd&id=52388e8502) and saw that they raised awareness at the NYC and Baltimore marathons.

    I'm up in Vancouver and we have a marathon coming up in early 2014. I've reached out to the marathon group, but would like to figure out who to talk to at CHERUBS to set something up.

    I'm more than willing to run a marathon to help raise awareness and can likely get some friends on board also.

    Anyone know who I should talk to?

    Sean

  2. #2
    Sean -

    Thank you for reaching out to CHERUBS about this. I've run the Baltimore Marathon 2 times and set up funding pages to raise money for the CHERUBS Research Fund. I've also run many other races throughout the year just wearing a shirt to help raise awareness for CHERUBS. It's another great way to help raise awareness. Please feel free to sign up for any race you would like to run. CHERUBS can help get you a funding page set up and an event page that you can send out to family and friends. You will need to contact Melissa Larrison our Fundraising Coordinator at: mlarrison@cherubs-cdh.org and she will help get you set up.

    Thank you again for wanting to help and I wish you all the best on your upcoming run. Make sure to send us and update on how the big day went.

    Thank you
    Freedom Green - CHERUBS volunteer
    On-Call for Grieving Families
    Facebook Admin
    CHERUBS Parent Advisory Board - ( CPAB )
    fgreen@cherubs-cdh.org
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )

  3. #3
    That is wonderful! Right now we are switching forces within our fundraising committee, for Melissa is stepping down as our fundraiser coordinator, but please send Ashley Barry a message in the meantime, abarry@cherubs-cdh.org. She will help answer any questions you may have. We will have a new fundraiser coordinator up and running here in 2014 after they are trained, both ladies have accepted. I will post when I have their info. to contact.

    If you would like to contact the CPAB with questions too, they can be reached at cpab@cherubs-cdh.org. Freedom is a great person to talk too, for she has run many marathons and raising CDH awareness and funds for CHERUBS at some of them.

    What a great thing you are doing!!!
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  4. #4
    Sounds amazing!
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  5. #5
    Great way to raise money and awareness!
    Amanda Mother of Liz born 09/09/2002 with LCDH,Emily 05/27/2005. Liz was diagnosed at 12 weeks in uetro 90 percent of left diaphragm missing. Gortex patch put in at 3 days old. Ever abdominal organ other then kidneys herniated. Born at 38 weeks, 6 lbs 11oz. Born in Hamilton ON. Hospitalized for 6 weeks. Rehirniated at age 6 and 3 surgeries age 10 almost lost my Cherub again. Duplication cysts on her stomach. Reflux and on going GI issues.

  6. #6
    Thank you Tracy for posting the update. I had typed up that message before I had read about the new change. Yes, please feel free to contact me if you have any questions about running races. I'd be more than happy to help. Again, thank you so much for doing this for CHERUBS. Running events are another great outlet to raising funds and awareness. Can't wait to see hear all about your upcoming event and read your funding page. Wishing you all the best on your training.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )

  7. #7
    Hi, Just checking in. Please let me know if I can answer any questions. Thank you for raising awareness!
    Ashley Barry Mom to CDH survivor Jessica and younger sister Leah
    Vice President CHERUBS board

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