Fall Festival Conference and Apple Picking Weekend is Coming!! instagram.com/p/Chm3i_arvL-/…
Today Show included an MSUD, an Allied Disorder or PKU in their story today.
Parents across the country are facing a crisis as supply chain issues and recalls have caused a massive baby formula shortage. @jolingkent has the latest.
NECPAD retweeted
Get your #TastyTuesday with #LowProtein Sweet Potato Toast!
#DietforLife #LowProteinLiving #Homocystinuria
NECPAD retweeted
#HCU NEW Homactin AA Plus Powder in Lemon Lime*! Request at samples.cambrooke.com or call 866 456 9776.
You're RARE. We CARE. For every sample feedback card received, we will donate $10 to HCU Network America**.
*Indicated for HCU.
**Terms & conditions apply.
NECPAD wants to invite everyone to attend our (FREE!) virtual meet up TONIGHT! Check out our Facebook page, for Facebook event. PLEASE RSVP as soon as you can so we know who is coming or email us at [email protected]. Zoom link will be posted and emailed at 6PM.
YOU’RE INVITED to attend our (FREE!) virtual meet up next Tuesday night! This will be an amazing opportunity for our rare community to all get together! Check out our Facebook page, we have a Facebook event posted PLEASE RSVP. The day of the call we will post the meeting link.
Do you know that your PKU story can have an impact on educating Members of Congress and galvanize their support for the Medical Nutrition Equity Act? Have you shared your PKU story? Do you want to make a difference? What are you waiting for? nutritionequity.org/share-yo…!
Fact of the day: Anyone with PKU or it's allied disorders can live a long normal life, if they stay on diet.
Fact of the day: While PKU isn’t deadly, most of it’s allied disorders are, either with brian edema or by long term effects that can cause death.
Fact of the day: PKU's Allied Disorders includes Organic Acidemia Disorders that has a range of disorders. To find a complete list and description of them visit oaanews.org/oa-disorders.htm…
Fact of the day: PKU’s allied disorder, Tryosinemia (TRY), is when someone has a hard time breaking down the amino acid, tyrosine.
Fact of the day: PKU’s allied disorder, Homocystinuria, (HCU) is when someone has a hard time breaking down the amino acid, homocysteine.
Fact of the day: PKU's allied disorder, Urea Cycle Disorder occurs in people when there is a deficiency of one of the enzymes in the urea cycle which is responsible for removing ammonia from the bloodstream.
Fact of the day: One of PKU’s allied disorders, Maple Syrup Urine Disease (MSUD), is when a person is missing or has an BCKDC enzyme that is not fully active. As a result their bodies can’t breakdown the amino acids leucine, isoleucine, and valine completely.
Fact of the day: PKU is a genetic disorder caused due to the deficiency of an enzyme called phenyl alanine hydroxylase
Fact of the day:
Most of NECPAD members are on low-protein diets. In many cases their diets includes medical foods and formula.
