Forms and Documents

Media Consent Form

The following information is required for the use of a minor’s photos in any publications. Please read each statement fully and complete the following form to submit your photo. Each photo/child requires a separate release form.

Minor's legal name. Known as minor hereafter.

Diagnosis

Email

I hereby consent and agree that the chILD Foundation and chILDRN research group, its employees, or agents have the right to use the supplied photograph and personal story of said minor exclusively for the purpose of furthering the awareness of the chILD syndromes and to raise funds in the name of my child.

Agree

I further consent that my or my child’s first name and diagnosis may be revealed therein or by descriptive text or commentary.

I do hereby release to the chILD Foundation and chILDRN research group, its agents, and employees all rights to exhibit this work in print and electronic form publicly or privately and to market and sell copies. I waive any rights, claims, or interest I may have to control the use of my identity or likeness in whatever media used.

I understand that there will be no financial or other remuneration for the use of the supplied photo, either for initial or subsequent publication.

I understand and agree that completion and submission of this on-line form and uploading of the digital photo constitutes a consent contract for the use of the photograph and information in lieu of an actual signature.

I represent that I am at least 18 years of age, the legal guardian of the child in the image, have read and understand the foregoing statement, and am competent to execute this agreement.

Full Legal Name of Guardian

Date

Phone

Upload Photo: (limit 5 MB)

We plan to have nurses on site to help monitor the children and watch for signs of illness. However, all medical care must be assumed by the families, and if your child is showing signs of illness they will not be allowed to participate in the OxyKids camp activities.  All parents must remain at the conference if they child is in the day camp. If there is not a designated family member/caretaker at the conference, you must take your child with you when you leave.

 


Parent/Guardian Information

Name

Email


Please Fill Out One of These For Each Child That Will Be Attending


Child 1

Name of Child

Diagnosis of Child (if they have chILD)

Age of Child


Child 2

Name of Child

Diagnosis of Child (if they have chILD)

Age of Child


The following information will be used for planning purposes only. You will be asked to fill out a full questionnaire and release of liability at the conference to confirm your preferences.

Does your child need oxygen?

YesNo

If your child does need oxygen, are they:

On oxygen 24/7At night only

Does your child need tube feedings while in the room? (If they are bolus feedings, not on a pump, you will be responsible to give this to your child)

YesNo

Does your child have any food allergies? If so, please list:

D
oes your child normally take a nap? If yes, when and how long?

For the younger children, is your child fully toilet trained? If in Diapers, you need to make sure to leave diapers and wipes for your child.

YesNo

For the kids over 5 years old, can your child swim unassisted (without any adult help or floatation device)?

YesNo

If yes, are you OK with your child swimming in the hotel pool with volunteers?

YesNo

Title

First Name

Last Name

Address

City

State

Zip

Country

Daytime Phone

Evening Phone

Email

chILD's Primary Diagnosis

T-Shirt Size

Other Adults Attending?
YesNo


If other adults are attending, please list below. (Please list full names)

1) Name

2) T-Shirt Size

2) Name

2) T-Shirt Size

3) Name

3) T-Shirt Size


Friday Night Picnic (included with your registration fee)

We Plan to attend the Friday Night Picnic
YesNo

Number of people attending the picnic (adults and children)

We will need transportation to and from the Denver Marriott and the event location
YesNo


Saturday Night Anniversary Gala

These Tickets are not included in your registration fee and will need to be purchased separately.

We plan to attend the Saturday Night Gala
YesNo

Number of people attending Gala (adults and children

We will need transportation to and from the Denver Marriott and the event location
YesNo


Please check if you are planning to participate in the FirstGiving Fundraise to offset you registration, Gala tickets or hotel.

(For more information about the Fundraising opportunities, please visit the link on the conference page.)

Participating in FirstGiving Fundraiser
YesNo

General Patient Information for Download

New Family Information (pdf)- This is a 1-page description of the chILD Foundation Programming that can be printed and given to your patients in the clinic. It contains our website link and a phone number where they can contact the foundation directly.

Get up and Go  (pdf)- This is a comprehensive guide to living with chILD and is a great resource for families. If you would like some hard copies of this to have in your clinic, please contact us.

ATS Series (pdf)- This is a single page printable informational sheet on chILD produced by the American Thoracic Society.

2012 Annual Report (pdf)

Disease Specific Brochures

We are in the process of updating and creating brochures for all of the chILD disorders. Please check back if you do not see your diagnosis featured.

NEHI pamphlet 5112011  (pdf)
PIG pamphlet 5112011 (pdf)
Surfactant pamphlet 5112012 (pdf)

  • Gwendolyn S. Kerby, MD, Brandie D. Wagner, PhD, Jonathan Popler, MD,Thomas C. Hay, DO, Carol Kopecky, RRT, Stephanie L. Wilcox, RRT, Ralph R. Quinones, MD,Roger H. Giller, MD, Frank J. Accurso, MD, and Robin R. Deterding, MD (2013) Abnormal Infant Pulmonary Function in Young Children With Neuroendocrine Cell Hyperplasia of Infancy. Pediatric Pulmonology 48:1008–1015 Download

  • Lisa R. Young, MD; Gail H. Deutsch, MD; Ronald E. Bokulic, DO; Alan S. Brody , MD; and Lawrence M. Nogee , MD (2013) A Mutation in TTF1 / NKX2.1 Is Associated With Familial Neuroendocrine Cell Hyperplasia of Infancy. CHEST. 144(4):1199–1206

  • J. Popler, MD, W.A. Gower, MD, P.J. Mogayzel Jr., MD, PhD, L.M. Nogee, MD, C. Langston, MD, A.C. Wilson, MBBS, FRACP, T.C. Hay, DO, and R.R. Deterding, MD (2010) Familial Neuroendocrine Cell Hyperplasia of Infancy. Pediatric Pulmonology 45:749–755.

  • Lisa R. Young , MD ; Alan S. Brody , MD ; Thomas H. Inge , MD , PhD ; James D. Acton , MD ; Ronald E. Bokulic , DO ; Claire Langston , MD ; and Gail H. Deutsch , MD (2011) Neuroendocrine Cell Distribution and Frequency Distinguish Neuroendocrine Cell Hyperplasia of Infancy From Other Pulmonary Disorders. CHEST 139(5):1060–1071

     

  •  Brody, Alan S. and Eric J. Crotty (2006) Neuroendocrine cell hyperplasia of infancy (NEHI) Pediatric Radiology 36:1328.

  • Robin R. Deterding, MD, Catherine Pye, MD, Leland L. Fan, MD, and Claire Langston, MD (2005) Persistent Tachypnea of Infancy Is Associated With Neuroendocrine Cell Hyperplasia. Pediatric Pulmonology 40:157–165