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Thank You 2023 Sponsors and Save the Date for NOTA Camp 2024
Thank You 2023 Sponsors and Save the Date for NOTA Camp 2024 A huge THANK YOU
Newly Diagnosed? Here's What You Need to Know
Providing families affected the resources available to them.
Registration For The 2024 NOTA Experience
Note: As of now, there is no travel reimbursement available for the 2024 NOTA Experience. One Bus to and from Newark Airport will still be provided. Bus times are TBD on Sept 19 - 24. Please plan accordingly.
Thank you for understanding
Registration is Now Closed
Thank You To Everyone Who Registered For The 2021 NOTA Experience
N.O.T.A. PROBLEM, We’ve got each other.
Providing families affected the resources available to them.
N.O.T.A. NETWORK
THE NETWORK OF TYROSINEMIA ADVOCATES.
We are committed to providing our customers with exceptional service while offering our employees the best training.
Supporting every parent. You are not alone in this struggle, and you have the support you need at critical times.
Striving for perfect newborn screening in an effort to never miss a child’s diagnosis ever again.
Gathering stories of our families, resources, recipes, and news related to Tyro to be shared with each other and hospitals.
N.O.T.A.Tyrosinemia
What Genes are Related to Tyrosinemia?
The FAHgene provides instructions for the fumarylacetoacetate hydrolase enzyme, which is responsible for the final step of tyrosine breakdown. The enzyme produced from the TAT gene, called tyrosine aminotransferase enzyme, is involved at the first step in the process.
The HPD gene provides instructions for making the 4-hydroxyphenylpyruvate dioxygenase enzyme, which is responsible for the second step.
Mutations in the FAH, TAT, or HPD gene cause a decrease in the activity of one of the enzymes in the breakdown of tyrosine.
- Support an appropriate rate of growth
- Support normal intellectual development
- Maintain optimal nutritional status
- Provide adequate nourishment
N.O.T.A.CARES
WE ARE WEAK AS ONE, BUT TOGETHER WE ARE STRONG.
This organization has been created to bring together the Tyro community. What started as a simple Facebook group has now turned into a worldwide community of families and friends who are or know someone who is affected by Tyrosinemia. Our goals are simple and aim to help spread information about Tyrosinemia and build a stronger community.
Host a Fundraiser
Fundraising events are fun and meaningful.
Funds raised are critical to supporting our research and patient projects.
We have resource kits and materials to help you.
Become a NOTA Ambassador
The NOTA Ambassadors are patients, friends and family members who want to volunteer and help us strengthen our community through events, outreach, and providing insights.
This group meets every other month and is a great way to give back.
N.O.T.A.CARES
There Are Three Types Of Tyrosinemia.
Each has distinctive symptoms and is caused by the deficiency of a different enzyme.
Medications Treatment
Nutritional treatment should be designed to minimize the phenylalanine-tyrosine load to only essential requirements.
Dietary Management
Because every child has a different “tolerance” of tyrosine and phenylalanine, dietary management is individualized.
Supplements Treatment
Phenylalanine needs to be restricted along with tyrosine. Phenylalanine is converted into tyrosine in the body.
N.O.T.A.CARES VIDEOS
Some OF OUR VIDEOS.
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