133 Molesworth Street
PO Box 5013
Wellington 6140
New Zealand
T+64 4 496 2000
16 May 2023
Amy Ferguson
By email: [FYI request #22556 email]
Ref:
H2023025230
Tēnā koe Amy
Transfer of your request for official information Thank you for your request under the Official Information Act 1982 (the Act) to Manatū Hauora
(the Ministry of Health) on 25 April 2023. You requested:
“1.The total number of New Zealand-born citizens who are currently living with Lou
Gehrig's Disease (ALS) or Motor Neuron Disease (MND).
2.A clarification on whether Lou Gehrig's Disease (ALS) is the same as Motor Neuron
Disease (MND) or if there are any differences between the two conditions.
3.If there are differences between Lou Gehrig's Disease (ALS) and Motor Neuron Disease
(MND), please provide the total number of people living with each condition separately.
4.A demographic breakdown of people living with Lou Gehrig's Disease (ALS) or Motor
Neuron Disease (MND), including age distribution and any known risk factors or causes of
the disease.
5.Historical data on the prevalence of Lou Gehrig's Disease (ALS) or Motor Neuron
Disease (MND) in New Zealand, particularly any observed trends in the number of cases
and any potential reasons for these trends.”
The requested information is held by Te Whatu Ora – Health New Zealand. For this reason, I
have decided to transfer your request to their agency under section 14(b)(i) of the Act. You can
expect a response from Te Whatu Ora in due course. Please accept our apologies for the delay
in transferring your request.
Under section 28(3) of the Act, you have the right to ask the Ombudsman to review any
decisions made under this request. The Ombudsman may be contacted by email at:
[email address] or by calling 0800 802 602.
Nāku noa, na
Jan Torres
Manager, OIA Services
Government and Executive Services | Te Pou Whakatere Kāwanatanga
COPY OF OIA REQUEST
From: Amy Ferguson
<[FYI request #22556 email]> Sent: Tuesday, 25 April 2023 05:34
To: OIA Requests
<[Ministry of Health request email]> Subject: Official Information request - Lou Gehrig's Disease (ALS) and Motor Neuron Disease
(MND)
Dear Ministry of Health,
I am writing to request information under the Official Information Act 1982 (OIA). I would like to
know more about the prevalence of Lou Gehrig's Disease (also known as Amyotrophic Lateral
Sclerosis or ALS) and Motor Neuron Disease (MND) in New Zealand.
Specifically, I am seeking the following information:
1.The total number of New Zealand-born citizens who are currently living with Lou Gehrig's
Disease (ALS) or Motor Neuron Disease (MND).
2.A clarification on whether Lou Gehrig's Disease (ALS) is the same as Motor Neuron Disease
(MND) or if there are any differences between the two conditions.
3.If there are differences between Lou Gehrig's Disease (ALS) and Motor Neuron Disease
(MND), please provide the total number of people living with each condition separately.
4.A demographic breakdown of people living with Lou Gehrig's Disease (ALS) or Motor Neuron
Disease (MND), including age distribution and any known risk factors or causes of the disease.
5.Historical data on the prevalence of Lou Gehrig's Disease (ALS) or Motor Neuron Disease
(MND) in New Zealand, particularly any observed trends in the number of cases and any
potential reasons for these trends.
I understand that under the OIA, I should receive a response to my request within 20 working
days of the date it was received. If my request is too broad or unclear, please contact me so that
I can provide any necessary clarification.
Thank you for your assistance in this matter.
Sincerely,
Amy Ferguson
Page 2 of 2
