Connecting Families UCD Foundation

06/23/2026

Medical Diets can be very demanding and restrictive. Sometimes it can be hard knowing how to navigate a UCD diet with all the restrictions you have to watch out for + your own protein intake limit. 🥘 🗒️
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Making a list of known UCD safe foods that are good for YOU can be helpful! List off foods you like that are within your limit and still reserve room for other meals later on during the day.
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Eating out at a restaurant? That can be tricky. You don’t always know the exacts of what is in something someone else makes. During that situation looking up a menu online prior to going to a restaurant can help you find exact nutritional value in food items or at least help you estimate if nutritional charts aren’t available!
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Struggling with eating the same repetitive foods? Try learning a new recipe and modify it to be lower in protein! Need inspiration? UCD in Common has plenty to try out! Even YouTube!
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If you’re going to a function where food will be served ask ahead of time what is going to be served! If the options aren’t good for you there’s never any shame in bringing your own food that you know is within your range.

06/13/2026

Hello Families! Let’s talk about Emergency Medical Letters!
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An Emergency Medical Letter, often referred to as a Medical Alert Letter or a Medical Information Letter, serves several important purposes:
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1: Immediate Medical Information. In emergencies, it provides crucial medical information about the person, such as allergies, medical conditions, medications, and contact details for healthcare providers. This information can be vital for first responders or medical professionals to make informed decisions quickly.
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2: Patient Advocacy. It can act as an advocate for the patient’s needs and preferences when they might not be able to communicate them themselves. For instance, it can specify a patient’s desire for certain treatments or interventions.
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3: Peace of Mind. Having such a letter can offer peace of mind to individuals with chronic illnesses or complex medical histories, as well as their families. They know that essential medical information is readily available in emergencies.
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4: Avoiding Medical Errors. By providing accurate medical information, it helps prevent potential medical errors, such as administering medications that could interact negatively or exacerbating existing health conditions.
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5: Travel and Hospital Stays. It can be particularly useful during travel, as it ensures that medical details are accessible even when away from regular healthcare providers. In the case of hospital stays, it can help in providing a comprehensive medical history to the medical team.
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6: Legal and Ethical Considerations. In some situations, an Emergency Medical Letter can have legal and ethical implications, especially if it outlines the patient’s preferences for end-of-life care or medical decision-making when they are unable to do so.
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In summary, an Emergency Medical Letter is essential for ensuring that critical medical information is available promptly in emergencies, which can potentially save lives and improve the quality of care a person receives. 💓 🦓
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06/04/2026

Congratulations to all our graduates 🎓

We love YOU 🤍✨

05/29/2026

iECURE doing wonders for our babies 🤍✨ 🧬

PHILADELPHIA— May 18, 2026 – iECURE, Inc., a clinical-stage genome editing company developing variant-agnostic in vivo targeted gene insertion therapies for severe inherited neurometabolic disorders, today announced positive results from a preliminary analysis of the completed low-dose cohort of...

05/29/2026

Pharma doing great things for our UCD COMMUNITY🤍✨ 🧬

https://m.facebook.com/story.php?story_fbid=1329009915994427&id=100066562938001&mibextid=wwXIfr

Last week, we presented our poster at the Society for Inherited Metabolic Disorders (SIMD) 2026 Annual Meeting.

Missed us in person? Please see below or go tohttps://arcturusrx.com/wp-content/uploads/2026/05/SIMD-Poster-INTERIM-RESULTS-OF-PHASE-2-TRIAL-OF-ARCT-810-mRNA-THERAPY-IN-PATIENTS-WITH-2026-vFinal.pdf

05/17/2026

Exciting news from iECURE 🤍

https://iecure.com/news/iecure-presents-preliminary-clinical-data-from-ongoing-clinical-trial-of-ecur-506-in-ornithine-transcarbamylase-deficiency-at-the-asgct-annual-meeting/?fbclid=IwZnRzaAR2piNleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEe5zChUuAFKdBvcsxTHAZMUbXWUlD8QD-dHPUnMiqxaPSyEWMiSRREWgbJqqk_aem_psSTTFpkrl-6_ORcgXDp9w

PHILADELPHIA— May 13, 2026 – iECURE, Inc., a clinical-stage genome editing company developing variant-agnostic in vivo targeted gene insertion therapies for severe inherited neurometabolic disorders, today announced that data presented at the American Society of Gene & Cell Therapy (ASGCT) Annua...

04/30/2026

In living with a UCD long term most of us know our bodies and know when it’s time for us to get checked out in the Hospital. Some of us can “sense” when something is off with us. But some of us might have a harder time identifying if something is wrong.
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Today we wanted to remind everyone, Caregivers and patients of what some of the most common symptoms of an incoming or active hyperammonemia episode.
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1: Confusion or Disorientation.
2: Excessive sleepiness/fatigue
3: Consciousness shifts. (Passing out/Blacking out)
4: Mood swings.
5: Issues with motor function.
6: Nausea and Vomiting
7: Seizures (in some cases)
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These symptoms can vary from person to person and depending on the severity of the amount of ammonia in the bloodstream you may only see subtle signs of a couple symptoms. While others may be more extreme in how they present. 🧬 ✨
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04/28/2026

We had such a wonderful time at our UCD FAMILY CAMP !!!!
Thank you to all who attended and our Sponsors who helped make this happen 🤍

04/17/2026

Excited to see our families next week !!!

04/16/2026

Connecting Families UCD hosts an annual camp to help create a strong community of support for families impacted by Urea Cycle Disorders (UCDs) by pro...