Family Name

Disorder

Address

City

State

ZIP

Home Phone

Day Number

Evening Number

Cell

E-mail


Will you be staying at the Pasadena Hilton? Yes No

Arrival Date

Departure Date

Are you a Medical Professional Yes No         Center

Please list the first and last names all your family members/friends attending the conference.

First Name Last Name Relationship Affected by UCD? Yes No

First Name Last Name Relationship Affected by UCD? Yes No

First Name Last Name Relationship Affected by UCD? Yes No

Conference Registration Fees

NUCDF Members & Immediate Family (NO CHARGE)
Number Attending


Additional attendees and non-members ($50.00 each)
Number Attending


TOTAL ATTENDING

TOTAL Registration Fees


Number attending Friday evening Reception

(Location: NUCDF Offices, 75 S. Grand Ave., Pasadena, CA)

Number attending Saturday Luncheon

(Location: Hilton Pasadena)


Please list individuals requiring low-protein diet

First Name Last Name Age Disorder

First Name Last Name Age Disorder

First Name Last Name Age Disorder

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PRE-REGISTRATION FOR SPECIAL FRIDAY AFTERNOON WORKSHOPS IS REQUIRED
Two workshops will be held on Friday, July 24, from 1 pm to 5:00 pm. Registration for these Friday workshops, 1) Low-Protein Cooking Workshop and 2) School Issues Workshop is limited to the first 20 registrants. Register Early! To register, please complete the separate Workshop Registration Form.

When: Friday, July 24, 2009  
Workshop Location:  NUCDF Offices, 75 S. Grand Ave., Pasadena, CA (approximately 1.5 miles from Hilton Pasadena. Shuttle available from Hilton Pasadena—for reservations contact Argie Mandakas, below)

1:00 PM – 3:30 PM
Low-Protein Cooking Workshop: Led by Debra Geary-Hook, MPH, RD, Metabolic Dietician. Join Deb at our fully-equipped kitchen facilities for live recipe demos, lo-pro tips and tricks and lo-pro product discussion.

3:45 PM – 5:00 PM
From IEPs to Lunch—Dealing with School Issues: Moderated by educator and OTC mom, Allison Seielstad, EdS, NCSP, and Debra Geary-Hook, MPH, RD, Metabolic Dietician. Tips for navigating school issues and advocating for your child, including IEPs and special diet accommodations.

Friday, July 24 Special Workshops REGISTRANT INFORMATION:

First Name

Last Name


Disorder


Address

City

State

ZIP


Home Phone

Day

Evening

Cell


E-mail


Registering for (check one or both):
Low Protein Cooking Workshop
From IEP to Lunch—School Issues Workshop

NO CHILDCARE IS AVAILABLE ON FRIDAY, JULY 24, 2009
For questions and information contact: Argie Mandakas, NUCDF Director of Member Services
(626)578-0833 E-mail: argie@nucdf.org

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CHILDCARE PRE-REGISTRATION
Childcare will be provided on Saturday, July 25, 2009 only, from 7:45 am to 12:00 pm and from 1:30 pm to 5:30 pm.
Will you need childcare on Saturday, July 25?Yes No


If yes, please complete Childcare Pre-Registration below. Pre-registration for childcare is required. We will not be able to provide care at the conference without pre-registration. Parents will be responsible for administering any medications or food. If your child has any special needs or will need one-on-one care, please indicate so that we will be able to accommodate all children appropriately. To ensure the safety of all the children, please DO NOT bring your child to childcare the day of the conference if your child has a viral illness or has been exposed to one. If you have any questions regarding childcare, please contact Argie Mandakas at (626)578-0833 or e-mail at argie@nucdf.org Please list the names and ages of the children who will require childcare and indicate any special needs. Please also list play activities, videos, or games your child may be interested in while attending childcare.

First Name Last Name Date of Birth Affected by UCD? Yes No Activities Special Needs

First Name Last Name Date of Birth Affected by UCD? Yes No Activities Special Needs

First Name Last Name Date of Birth Affected by UCD? Yes No Activities Special Needs

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MEMBERSHIP QUESTIONNAIRE and ANNUAL MEMBERSHIP CONTRIBUTION
Families are our Foundation. Your membership contribution makes the difference in enabling us to help UCD families and supports our goals to raise awareness, educate families and professionals, and increase research. It will be used to keep our database current in order to provide improved support services to our members. Thank you in advance for your support!

First Name

Last Name


Address

City

State

Zip

Country


Phone


E-Mail


Occupation
Self

Spouse


I would like to receive the NUCDF Newsletter and Bulletin via E-mail
Yes No

Regular Membership $35.00
Professional Membership $35.00
I have enclosed an additional tax deductible contribution of $ to help achieve our mission goals.

Please provide information on how I may become more involved in NUCDF I am interested in:
       Fundraising
       Clinical Trial/Research Participation
       Volunteering

Completing this confidential questionnaire helps us in identifying the number of individuals and age groups within each disorder and aids in identifying issues that need increased research. We respect your privacy and will never share identifying information with any entity without your express permission. Please feel free to attach your comments or suggestions for NUCDF, and let us know how we can help you. Thank you.

Have you registered with the UCD Consortium Research Registry?
Yes No

Are you or your child enrolled in the UCD Consortium Longitudinal Study for UCD?
Yes No      UCD Consortium Center

I would like to be contacted by NUCDF staff for more information about on the above.
Yes No

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SECTION A

If you are an adult with UCD, please complete the following: Disorder

Age at diagnosis

Current Age

Age at first symptoms

Please list relevant information regarding symptoms leading to diagnosis, current symptoms, family history, etc.

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SECTION B
Please complete the following information regarding all of your children, unaffected or affected with UCD (attach additional pages of history if necessary). Names are optional, but ages, etc. are extremely important.

Child #1: First Name Last Name Male Female Date of Birth Disorder AG AL AS CPS OTC NAGS None Living Age at time of diagnosis Current Age Approx. Developmental Age Deceased Age at diagnosis Age at death Date/Year of Death Cause of death Hospital

Child #2: First Name Last Name Male Female Date of Birth Disorder AG AL AS CPS OTC NAGS None Living Age at time of diagnosis Current Age Approx. Developmental Age Deceased Age at diagnosis Age at death Date/Year of Death Cause of death Hospital

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SECTION C: MEDICATIONS USED
Sodium Phenylbutyrate (Buphenyl)
Sodium Benzoate
Ammonul (IV Rescue Med)
Carnitine
Citrulline
Arginine
Other

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SECTION D: Healthcare Professional Information

Metabolic Physician/Geneticist

Hospital/Location

Dietician/Nutritionist

Hospital/Location


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