Completed
 
 
 
 
Online link Update
Advancement Website → Requests
Due Open Deliverables
  / 1
Project Lead Project Team
not assigned not assigned
Sponsor Information
MedicineKai KhambattaDevelopment Assistant
Project Description
See attached website request(s)
Deliverables
Request TypeDue DateStatusAssigned TeamRequested Updates 
Fund - Update fund page contentCompleteJason Phenicie

Add to the Webpage: 

 

“R.J.’s Gene Team @ UF.” This fund will be used to support individuals with Barth syndrome by providing airfare, lodging, and food while traveling to UF for pre-trial screening, again for the actual infusion, and follow-up care.

R.J. was born in 1998 with a very rare genetic condition called Barth syndrome. Since his birth, we have entrusted his care to Dr. Barry Byrne and his team at the University of Florida, Shands Hospital. For the same 21 years, Dr. Byrne has been researching Barth syndrome and has been a pioneer in the development of gene therapy for similar disorders. Dr. Byrne and his collaborators now believe that gene therapy for Barth syndrome is within reach!

What is Barth syndrome?

Barth syndrome is a serious X-linked genetic disorder, primarily affecting males, caused by a change in a gene called TAZ. In someone with Barth syndrome, the TAZ gene has a change that prevents it from producing a functional gene product, leading to the symptoms R.J. and others with Barth experience.

What are the most prevalent characteristics of Barth syndrome?

Cardiomyopathy - A weak heart muscle usually associated with enlargement of the heart.

Neutropenia - A reduction in “neutrophils,” a type of white blood cell that is most important for fighting bacterial infections.

Muscle weakness - All muscles, including the heart, have a cellular deficiency which limits their ability to produce energy, causing chronic fatigue.

How will gene therapy help?

Gene therapy technology uses a virus, administered via infusion, to place a working copy of the TAZ gene into cells. Copies of the virus will go throughout the body, with the goal of targeting the heart and the skeletal muscles. That means, if successful, cells will begin producing their own TAZ gene product - functioning just like a cell without Barth syndrome.

🔎 ✏️

WEBSITE REQUEST

Created on Jan. 15, 2020 at  8:44 AM (EST). Last updated by Jason Phenicie on Feb. 26, 2020 at  4:50 AM (EST). Owned by Anonymous.
Anonymous
Jason Phenicie
Show fields from Show fields from Show fields from a related table
Report Name *
Description
Reports and Charts Panel
Each table has a panel listing its reports and charts, organized in groups.
Please wait while your new report is saved...
Field label
Column heading override
Justification
What does auto mean?
Fields in:

Fields to Extract:

Name for the new table:
Items in the new table are called:

When you bring additional fields into a conversion, Quickbase often finds inconsistencies. For example, say you're converting your Companies column into its own table. One company, Acme Corporation, has offices in New York, Dallas and Portland. So, when you add the City column to the conversion, Quickbase finds three different locations for Acme. A single value in the column you're converting can only match one value in any additional field. Quickbase needs you to clean up the extra cities before it can create your new table. To do so, you have one of two choices:

  • If you want to create three separate Acme records (Acme-New York, Acme-Dallas and Acme-Portland) click the Conform link at the top of the column.
  • If the dissimilar entries are mistakes (say Acme only has one office in New York and the other locations are data-entry errors) go back into your table and correct the inconsistencies—in this case, changing all locations to New York. Then try the conversion again.

Read more about converting a column into a table.

We're glad you're interested in doing more with Quickbase!

Now we need to make you official before you share apps or manage your account.

Verifying your email lets you share Quickbase with others in your company.

Your work email
Your company