Andreas - Rares


Here are a few questions that people usually ask us:

1. What is Allan-Herndon-Dudley Syndrome?

Allan-Herndon-Dudley Syndrome is determined by a rare genetic mutation and it only affects boys. Basically what happens is that the thyroid produces the right hormones and in the right amount but because of the blood brain barrier (BBB) those hormones cannot reach the brain. Working without these hormones the brain does not develop properly. On the other hand, the hormones are "stuck" in the body without being able to perform their duty they can reach toxic levels in the blood. See the AHDS presentation I made.

2. Why not in Greece?
Because here we haven't managed to find the medical support needed.

3.What about the medical trial?
The Erasmus Hospital in Holland initiated a medical trial for a medication that is believed to improve and/or treat the state of the AHDS patients. The medication is called TRIAC and it is already used in France for treating other syndromes. The medication is ONLY legal in France.

4. Does keep a percentage of donations?

No, does not keep a percentage of the donations. The only one who keeps a small percentage is the money transfer provider, in this case Paypal.

5. Do you need to have achieved the goal in order to have access to the amount?

No, we are receiving the money the second you send them and we can use them while the fundraising is still going.

6. What are the money going to be used for?
The money is going to be used at this point for medical equipment (ex. he needs a medical walker), therapies, nutrition expertise and specialized supplements. In the close future he will also need ergo therapy and behavior therapy.

Please write to us if you have other questions. We will be more than happy to answer them.