Pictures from Nutricia Cooking Class 2015

Nutricia Cooking Class 2015

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Board Positions Open for 2016

Board Positions 2015 p1

Board Positions 2015 p2

Board Positions 2015 p3

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Event: Grocery Store Tour – Chicago August 20th

Flyer- Lil's Grocery Store Tour

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Childrens Memorial Clinic Info Update!

Details here

Details for all Illinois Clinics are in the menu under Resources > Illinois Clinics

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New Updated Mission Statement

It is in the menu under “Contact US.”

PKU Organization of IL Mission Statement:

We have three key parts to our mission for the PKU Organization of Illinois. First, and one of the most important, is to support the person, and the families affected by the person, with PKU and Allied Disorders. Second, is the organization will spread information and awareness of PKU and Allied Disorders to the PKU/Allied Disorder community, as well as, the outside community. Lastly, constantly raising funds to aid in the continued research of medical updates and changes of PKU and Allied Disorders. As part of our fund raising we will stay connected with local and national lawmakers to be informed and inform others of the medical changes and necessary events related to PKU and Allied Disorders.

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PKU 31 Fundraiser

Here are the details of the PKU 31 fundraiser!
What- 3rd annual Thirty One Gifts Fundraiser for PKU organization of IL
When- open online July 1st-20th
Why- to raise money for the PKU organization of Illinois and have hostess rewards donated for fundraisers later this year

What to do?
Use this link to shop starting July 1st and ending on the 10th. Have your order direct shipped to you at check out!
http://www.mythirtyone.com/465682/shop/Party/EventDetail/8360358

July is Thermal month! For every $35 you spend, get 1 of 5 thermals for 50% off! See attachment

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NEW EVENT: Nutricia Naperville Low-Protein Cooking Class

Register Here

2015NutriciaClassFlyer

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STUDY RECRUITMENT: Liver Cell Transplant for Phenylketonuria

Full Details Here

The purpose of this research study is to determine whether partial irradiation of the liver and liver cell transplantation can reduce the need for dietary and medical management or could possibly eliminate the need for a special diet and medications to treat this disease for patients with phenylketonuria (PKU) by normalizing phenylalanine levels in the body. Phenylalanine (Phe) is a substance needed in the body that can only be obtained from the foods people eat. People with PKU cannot get rid of Phe in their body. Large amounts of Phe can cause problems, such as deterioration of mental function. At the present time, liver cell transplants are experimental and have been done in only a limited number of human subjects.

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Thank you for coming to the Family Fund Day 2015

Cosley Zoo 2015

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Take Action! HR971

Action Alert
Take Action!
OPEN ACT & United Rare Disease Day

Please call Congress TODAY and ask them to include the OPEN ACT, HR 971 (Orphan Product Extensions Now, Accelerating Cures & Treatments) in the 21st Century Cures Legislation. The OPEN ACT has the potential to double the number of approved rare disease treatments available to patients. To date, 155 patient organizations support the OPEN ACT, including NORD, Global Genes, and the Genetic Alliance. By standing together we can ensure Congress helps rare disease patients.
Click here to take action: Stand up for Rare Disease Patients TODAY

Open Act HR971

Please share this alert widely and join our event on Facebook.
Why the OPEN ACT is important: Despite advances made possible by the Orphan Drug Act, 95 percent of the 7,000 rare diseases still have no approved treatments. Biopharmaceutical companies are not repurposing major market therapies to treat rare diseases because there is no incentive for them to do so.
The OPEN ACT is bipartisan legislation that creates an economic incentive for companies to repurpose drugs for rare diseases. The OPEN ACT could:
• Bring hundreds of treatments to rare disease patients
• Enable access to safe, effective and affordable treatments
• Spur biotech investment, innovation, and foster clinical research at universities while creating new jobs
Learn more at: http://curetheprocess.org/incentivize/
Sincerely,
Max G. Bronstein, MPP
Senior Director, Public & Government Relations
Phone: 415-884-0223
EVERYLIFE FOUNDATION FOR RARE DISEASES
Accelerating Biotech Innovation for Rare Disease Treatments

Take Action Now – ask your representative to co-sponsor the OPEN ACT HR 971 to help bring treatments to rare disease patients!

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