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[Molleke2]

Hello, my name is Molleke2 and I live in Holland.

I have SCA-type 3.

I joint this community to help exchange information about SCA/ ataxia.

Together we know more !

I'm sorry if my English is not so good.

greetz Molly.

[Sunny8088]

Welcome friend , I have SCA3 , Live in Orlando. There are many places on Google to find info.

Ataxia.org , Livingwithataxia etc

[wobblybee]

Hi Sunny😊 Hope you are well 😊xBeryl LWA

[wobblybee]

Hi Molly, welcome😊

For more online support

On Facebook search - Machado Joseph Disease aka SCA3

I do not have SCA3 but share many similar symptoms 🙂xBeryl

[Sharon_g in reply to wobblybee]

Morning have you got one specially for Sca1?

[Molleke2 in reply to Sharon_g]

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Eleven families with incurable hereditary disease SCA1 raise € 150,000 for research

Posted on February 16, 2016

Investigation starts immediately

Eleven families in which the rare, inherited disease and incurable prevents SCA1, have in five months € 150,000 collected for the development of a method of treatment for this disease. The first phase of the study will start immediately with the amount that has been collected through donations and various sponsor activities. The research is conducted at the Leiden University Medical Centre (LUMC) by researcher Dr. Willeke van Roon-Mom. This afternoon, the sponsor presented a big check to the Brain Foundation, which monitors the quality of the research.

From left to right: dr. Willeke van Roon-Mom (LUMC), Amber van der Toorn (Brain Foundation), Henk Engel (inititiatief taker).

SCA1 (Spinocerebellar ataxia type 1) is an inherited disease of the central nervous system. The little brains that control movement die off due to a defect in the gene ATXN1. The first symptoms are SCA1 speech, swallowing and gait disturbances. The disease course is severe. Patients end up in a walker in a wheelchair eventually die prematurely as a result. In the Netherlands there are fifteen families with SCA1.

Sister with SCA1

Initiator of the fundraiser Dr. Henk Engel.; his sister Johanna SCA1. He noticed her strange movements. And because Johanna's sister was then in an advanced stage of SCA1, Johanna dropped testing. Unfortunately, the disease has also been diagnosed with. Johanna has four children. Her children have a 50% chance that they get the disease. Henk, clinical chemist, this was reason to identify Dutch families with SCA1 and dive into the research literature. So he came in contact with a researcher Willeke van Roon-Mom of the LUMC. She conducts research on hereditary brain disorders.

To start researching SCA1 needed at least € 150,000. For the amount of money get together, Henk started a campaign with all the families involved in September 2015. Www.hersenziekte-sca1.nl The website was created and various activities were started. Rather than expected is the € 150,000 assembled and can begin the first phase of the study directly. For the research phases after the fundraising continues to go on.

Error protein little change

Dr. Willeke van Roon-Mom: "The brain disease SCA1 is caused by an error protein is made in the small brains. Because of this incorrect protein cells die off in the small brains. The damage caused is so irreversible and leads to symptoms of SCA1. In this first phase we will look for ways to change the faulty protein a little bit, or we ensure that rendered less harmful protein so it can do less damage to the brains. "

Peter Schoof, Director of the Brain Foundation: "How nice that this huge amount is spent in such a short time together. If Brain Foundation we have the expertise to engage the best researchers available money. Dr. Willeke van Roon-Mom LUMC is a top researcher in the category of brain disorders where SCA1 is covered. "

Heart Netherlands filmed the presentation of the check.

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[Sharon_g in reply to Molleke2]

Thanks so much can't wait to go on the site

[Molleke2 in reply to wobblybee]

hi Beryl, thank you.

hope you are doing ok.

Molly

[Sharon_g]

Welcome I have Sca1 joined and diagnosed July . This site is very helpful if you got Facebook also join them just as helpful 😁

[wobblybee in reply to Sharon_g]

Hi Sharon 😊 More online support via Facebook😊 Search - Spinocerebellar ataxia awareness and research support group😊xB

[Sharon_g in reply to wobblybee]

Thanks I'll look it up

[Molleke2 in reply to Sharon_g]

hi Sharon, there is a group of Dutch family members raising money exspecially for SCA1. you are able to find more info at Hersensticting.nl and maybe ataxie.nl . I used google translate for this page

Molly

[Sharon_g in reply to Molleke2]

Thanks Molly I'll go and read

[Molleke2 in reply to Sharon_g]

this is a dutch site expecially for sca1, they already collected a lot of money for research hersenziekte-sca1.nl

[february]

Dear Molly, A HUGE welcome to this site! I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) and live in the USA-State of Michigan. My best to you...,;o)

[derbyrose]

Do not worry about your English, your wording is very cute and sweet sounding.

[Molleke2 in reply to derbyrose]

haha, you're all so kind

[Sqd-2415_hoc]

Hi Molly I have CA - no number as it's idiosyncratic (unknown origiin). Don't worry about English sure you are being modest We have friends in Vleuten who speak better English than I do

Have good Christmas

Rod

[Molleke2]

Hi Rod, haha you're to kind.

Vleuten is nearby where I live!

Hope you are doing ok, dispite your CA.

you have a wonderfull Christmas aswell.

Molly

[NormanE]

Hi Molly, your English is way better than my dutch! Welcome I don't always go on this sight but when I do I've found it helpful and informative, I haveCA sca3 as well.i hope your well though