Skol PKU Advocates

02/16/2021

Rare On The Road Switched To Virtual

02/16/2021

Got this email today if you’re interested in doing more in the Rare Disease Community please add Nord’s newsletter to your email contacts a great resource

02/10/2021

Made a new decal tonight

02/07/2021

Advocating at its finest making move and correcting injustices for the benefit of all

I am raising money because I am heartbroken that those in America can not afford to … Ryan Joseph needs your support for PKU Food and Formula Help Worldwide

02/02/2021

Rare On The Road Coming Up!!

02/02/2021

https://youtu.be/Gp2tvSFYO7U

01/28/2021

Appreciate everyone who supports Skol PKU Advocates! Sorry haven’t been keeping up with this at all I will be updating with resources soon and when registration opens for advocate and PKU events

09/02/2020

Who is fortunate enough to be able to be on Palynziq and relax our diets? Please let's pay it forward by starting a PKU Food Shelf for those without medical food coverage. No Medical Nutrution Equity Act as of yet let's provide the nutrition our selves let our community take care of those who are less fortunate than we are...

Who has resources?
Who has ideas?

Let's make it happen!!

09/02/2020

Advocacy has mostly gone virtual that being said TJ Maxx is raising money for Autism which is great I highly encourage everyone to donate if they are able.
WILD THOUGHT!! How do we get big corporations to raise money for Rare Diseases?
Any info would be appreciated

08/10/2020

Live in the NJ, DE, or Long Island Area? Join us for our Virtual Paint & PKU Event! Once you register, you will receive your paint supplies and everything you need for our Formula Sampling and Food Demo! 🎨

Get painting, tasting formula and learning a new way to cook low protein food on Tuesday, August 18th at 2.00 pm EST!

To reserve your space call Alison 774-329-0344 or email [email protected].

When RSVPing please include your name, address and phone number.