Do you want to get in touch with some... - Leukodystrophy Su...

Leukodystrophy Support

195 posts

Do you want to get in touch with someone with a similar experience of ALD or AMN?

22 Replies

If you do, we have a contacts list full of people willing to provide support about all aspects of the disorder. If you are interested in a copy, please get in touch: info@aldlife.org.

Or, if you would like to be added to our contacts list, please still get in touch with your details including how you’re affected with ALD or AMN.

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22 Replies
Dantes profile image
Dantes

Hey ! i've a amn !

in reply to Dantes

Hello Dantes,

Thank you for getting in touch. If you would like to get in touch with somebody for support about AMN, please send us an email to info@aldlife.org and I will send you our contacts list.

RonaldoALD profile image
RonaldoALD in reply to

Hi Sara'

My son was diagnosed to have ALD he was 6 years old was recently diagnosed with ALD and given less then 2 years of his life. Every week he is changing for the worse and I am doing anything in my power to find help and resources for my family. will you give me any advice, and how to help me on finances I mean do you have any idea where can I get help

in reply to RonaldoALD

Hi RonaldoALD,

Thank you for getting in touch. I am really sorry to hear about your son. We have a contacts list full of people who would be able to help provide support to you about all aspect of the disorder. Please send me an email to info@aldlife.org and I will be able to respond with the contacts list.

We also provide grants to families for accessing equipment, care or therapy. If you would like a grant, you can find more information about how you can apply here: aldlife.org/about-us-what-w...

RonaldoALD profile image
RonaldoALD in reply to

Hi Sara,

I am a Filipino do you have any contact persons that I can talk to, here in my country and also how can I grant those equipment that you offer. By the way my email address is onald_mafi@yahoo.com.ph

in reply to RonaldoALD

Hello, We don't have a person based in Philipines. But we however have a few AMN sufferers in Australia and the pacific region. I will send an email to you with our contacts list.

For a grant, you will need to email us info@aldlife.org with an invoice or quote of equipment, care or therapy and a letter from your doctor stating your son has ALD.

RonaldoALD profile image
RonaldoALD in reply to

Hi,

How much should it cost me? to tell you the truth I recently quit my job in Saudi Arabia because of my son condition ,and I'm out of finances to support his needs and medications and I'm looking for some organization who are willing to help me financially whatever it takes to support him I'm willing to send all the documents you needed to prove that i'm telling you the truth

in reply to RonaldoALD

Hi RonaldoALD,

Please email info@aldlife.org with a letter from your doctor proving your son's condition and an invoice or quote from a supplier providing you with care, equipment or therapy.

Once we receive these, we will try our best to transfer necessary fund to your account.

RonaldoALD profile image
RonaldoALD in reply to

thanks Sara

Dantes profile image
Dantes

ok so i m french and i don't speack english ... So ok and thank you ! :)

in reply to Dantes

Yes, that's OK. We have people based in France as well who maybe able to help you. Please send us an email, or message us with your email address. I look forward to be hearing from you

Dantes profile image
Dantes

hey Sara! my mail : maximusbzh@yahoo.fr :)

in reply to Dantes

Thank you Dantes. I will send you an email with our contacts list now.

Dantes profile image
Dantes

Thank Sara ! :)

Chacho308 profile image
Chacho308

Sara I am located in California, U.S. Do you have any knowledge of specialists or contacts that are in this state? Thank you!

-Jose

Hi Chacho,

You can get in touch with the ALD-AMN Global Alliance By cpoying and pasting this link: ald-amnglobalalliance.org/c...

They will be able to direct you to your nearest specialist.

lovehopejoy profile image
lovehopejoy

Hi ,I live in Canada.I would love to have a copy of your contacts list and also be added to it.

I have two sons affected with ALD.My eldest son Kieran (in the pic) is now 23 yrs old.He has recently had a GJ tube inserted.My younger son is 17yrs old and so far only has the adrenal insufficiency.

I can add more info as needed.

So glad to have found your site,Sara you are an amazing person.I can't believe what you have accomplished,given what you have been through.

Thank you,Debbie

in reply to lovehopejoy

Hi Debbie,

Thanks for getting in touch. I am really sorry to read about your two sons. I am pleased to read that you would like to be added to our contacts list.

If you could send ALD Life an email to info@aldlife.org with your full name, address and telephone number, I will be able to both add you to our contacts list, but also reply with a contacts list attached.

Regards,

Roker1176 profile image
Roker1176

I am a 42 year old with AMN would love contacts

Roker1176 profile image
Roker1176

Wondering if anyone else has similar symptoms to discuss

Equinney profile image
Equinney in reply to Roker1176

Roker1176, if you haven’t, look up AMN easier on HealthUnlocked. Always discussions there. I have learned a lot about this disease. I am 44 and recently diagnosed. Can message me if you like, may not be much help other than on symptoms I suffer also.

Hope4l profile image
Hope4l

I have a 11yr. old boy with servere ALD, as well as myself suffering from symptoms of AMN.

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