Adam and Lea vs Sanfilippo

€11,752 of €20,000 goal

Raised by 68 people in 34 months

This is a fundraising page of Adam and Lea
- amazing siblings who share not only big brotherly Love but also fatal genetic disease. The target 20k EUR is just for the beginning and set as it is compulsory on gofundme. We are fundrasing money in many diffrent ways, but this very easy to use method is also very important. Please support us even with small donations.

To summarise our goals:
-get an approved treatment for MPS3 Sanfilippo
-support research and clincial trials (gene therapy,
enzyme replacement therapy) for MPS3

-cooperate on this goal globally with all relevant foundations

Detailed information about our kids, possible treatments and our work you can find on:
website: http://www.adamlea.eu/  and
FB page: https://www.facebook.com/adamandlea/

For donors who would like to deduct their donations from the tax bills:

If you pay your taxes in Poland:
Please donate via our Fundacja Sanfilippo
( www.sanfilippo.org.pl/):
http://sanfilippo.org.pl/pl/darowizna/

If you pay your taxes in Germany:
Please donate via our Sanfilippo Initiative e.V. ( http://www.sanfilippoinitiative.org/):
https://secure.spendenbank.de/form/2961/ 
 
Please note that donors are never charged fees. if you are interested in donating larger amount please contact us beforehand on info@adamlea.eu.


Adam and Lea both suffer from genetic metabolic disorder, MPS3 also referenced to as Sanfilippo syndrome. This disease will allow them to develop only until age 3-4, afterwards taking away from them all the skills they acquired and eventually also their life. Children with Sanfilippo die before reaching adulthood and the average life expectancy is around 15 years.

To make the future of Adam and Lea (and other children suffering from the same disorder) different than the one described above we raise funds to help researchers around the world in finding a cure for Sanfilippo. Currently promising treatments are at a stage of clinical trials on humans. If they turn up successful Adam and Lea will be saved. However, in such trials only a very limited number of small patients can take part. Moreover, in case of Sanfilippo it is time that counts the most as the disease is quickly progressing. Therefore, we want to support and extend the current trials as well as other research currently conducted to find an effective cure for Sanfillipo before Adam and Lea die. We coordinate our efforts globally by cooperating with inter alia:
-The Sanfilippo Children’s Foundation (AU)
-Cure Sanfilippo Foundation (US)
-Fondation Sanfilippo Suisse (CH)

Some part of the collected funds will be used for rehabilitation to ensure that Adam and Lea are in good health while waiting for the cure.

You can support Adam and Lea by:
- donating money
- sharing the information about them on your facebook profile


By supporting Adam and Lea you are helping all kids with Sanfilippo and also other small patients with similar rare diseases.

If you have any other ideas how to support us or you need more details about Adam and Lea please contact us on info@adamlea.eu or visit our website:  http://www.adamlea.eu/ and
FB page:  https://www.facebook.com/adamandlea/
+ Read More

€11,752 of €20,000 goal

Raised by 68 people in 34 months
Created February 11, 2016
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
LB
€30
Lena Brandt
5 months ago

hab euch lieb

FB
€30
Familie Bollenbeck
6 months ago

Von Herzen alles Liebe. Stefan, Michaela & Amelie Bollenbeck.

€100
Anonymous
18 months ago
€100
Anonymous
22 months ago
€100
Anonymous
22 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a €5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.