Help us save 9 children with MPS in SA
Mucopolysaccharidoses are a group of metabolic disorders caused by the absence or malfunctioning of lysosomal enzymes needed to break down molecules.
Without treatment, it is life-limiting, progressive, with a poor quality of life.
People with a mucopolysaccharidosis disease either do not produce enough of one of the 11 enzymes required to break down these sugar chains into simpler molecules, or they produce enzymes that do not work properly. The result is permanent, progressive cellular damage which affects appearance, physical abilities, organ and system functioning, and, in most cases, mental development.
There are various subtypes of MPS, some of which no treatment exists. However, in South Africa, we presently have 9 patients with treatable forms of MPS (Hunters and Hurlers syndrome), yet only one child is being treated.
The main reason for decline in funding is due to the cost of the medication, which is very expensive. However, with treatment, these children can have a greatly improved quality of life, and function normaly in society. This is the only medication available for them, yet, our funders (medical aids and goverment) think it is fair to place a pricetag on these children, and have valued their lives as less than the cost of medication.
LETS VALUE THESE CHILDREN AT THEIR TRUE WORTH - PRICELESS!
Today is international MPS day - lets give these kids something to celebrate.
http://i.imgur.com/64ouWhI.jpg
http://i.imgur.com/ILYEFY9.jpghttp://i.imgur.com/Va5wekH.jpg?1http://i.imgur.com/vw5Au4N.jpg?1
For more information please contact:
Rare Disease Society of SA
www.rarediseases.co.za
Rare Disease Society of South Africa Contact the author of the petition
Announcement from the administrator of this websiteWe have closed this petition and we have removed signatories' personal information.European Union's General Data Protection Regulation (GDPR) requires a legitimate reason for storing personal information and that the information be stored for the shortest time possible. |
Log in to manage your petition. |
PETITION OPPOSING ARROWHEAD AIRPARK IN CASS COUNTY MISSOURI
Petition Against the Installation of a Biodigester at Wilson Rd, Fairfield Township, Madison County, Ohio
Bend to the Beach Road Initiative
Wyandanch Warriors Vs Wyandanch Wolves
Proclamation for a Restored Republic
Richard Bong State Recreation Area Class 1 Dog Training Area Requested Change
Hardworking People Against AB 928
The adoption and ratification of a new calendar for the United Global Trade Organization
Protect the pure breed Danish-Swedish farmdog from puppymills and inbreeding
No Bail For Rob Evans #JusticeForVanessa
Open Letter of scientists and entrepreneurs regarding MFF and FP10
Is there something you want to change?
Change doesn't happen by staying silent. The author of this petition stood up and took action. Will you do the same? Start a social movement by creating a petition.
Start a petition of your ownOther petitions you might be interested in
Richard Bong State Recreation Area Class 1 Dog Training Area Requested Change
351 Created: 2025-06-17
Time period | Number of signatures |
---|---|
All time | 351 |
30 days | 351 |
Hardworking People Against AB 928
314 Created: 2025-06-19
Time period | Number of signatures |
---|---|
All time | 314 |
30 days | 314 |
Wyandanch Warriors Vs Wyandanch Wolves
87 Created: 2025-06-10
Time period | Number of signatures |
---|---|
All time | 87 |
30 days | 73 |
Petition to Amend Lawton's I-4 Zoning Ordinance Verbiage
138 Created: 2024-03-14
Time period | Number of signatures |
---|---|
All time | 138 |
30 days | 73 |
Let the Hill Be Great: A World Class Park That Lifts Up All of Southeast San Diego
20 Created: 2025-06-12
Time period | Number of signatures |
---|---|
All time | 20 |
30 days | 20 |
Bend to the Beach Road Initiative
18 Created: 2025-06-24
Time period | Number of signatures |
---|---|
All time | 18 |
30 days | 18 |
Bring back "Julie and the Phantoms" for season 2
132 Created: 2025-02-11
Time period | Number of signatures |
---|---|
All time | 132 |
30 days | 22 |
Justice For Cwecwe
1173415 Created: 2025-03-27
Time period | Number of signatures |
---|---|
All time | 1173415 |
30 days | 412 |
Medirest Staff Barnet Hospital Pay Rise increase for 15%
145 Created: 2025-06-20
Time period | Number of signatures |
---|---|
All time | 145 |
30 days | 145 |
Élhetőbb gyermekkor Duchenne izomdisztrófiában
4730 Created: 2025-06-09
Time period | Number of signatures |
---|---|
All time | 4730 |
30 days | 4071 |
PETITION OPPOSING ARROWHEAD AIRPARK IN CASS COUNTY MISSOURI
182 Created: 2025-04-28
Time period | Number of signatures |
---|---|
All time | 182 |
30 days | 6 |
Make Armored Mud Balls a State "Sedimentary Structure"
462 Created: 2021-03-03
Time period | Number of signatures |
---|---|
All time | 462 |
30 days | 6 |
Protect the pure breed Danish-Swedish farmdog from puppymills and inbreeding
15 Created: 2025-06-07
Time period | Number of signatures |
---|---|
All time | 15 |
30 days | 5 |
Request to Pope Leo XIV to restore the norms of Summorum Pontificum
1577 Created: 2025-06-04
Time period | Number of signatures |
---|---|
All time | 1577 |
30 days | 235 |
Stop Wes Moore, and his desperate power grab to change historic tag qualification's.
387 Created: 2025-05-22
Time period | Number of signatures |
---|---|
All time | 387 |
30 days | 3 |
Proclamation for a Restored Republic
89 Created: 2025-04-26
Time period | Number of signatures |
---|---|
All time | 89 |
30 days | 3 |
Protect and Preserve Alexandria’s Old and Historic District - Petition to Disapprove Proposed Development at 301 N. Fairfax
938 Created: 2023-08-02
Time period | Number of signatures |
---|---|
All time | 938 |
30 days | 3 |
Unionville livestock ordinance text amendment
136 Created: 2025-05-20
Time period | Number of signatures |
---|---|
All time | 136 |
30 days | 2 |
Petition to Provo City Council In Opposition of a Waterpark at Slate Canyon
529 Created: 2025-04-23
Time period | Number of signatures |
---|---|
All time | 529 |
30 days | 2 |
Youth Matter in Lexington: Create a Youth Advisory Committee
7 Created: 2025-05-30
Time period | Number of signatures |
---|---|
All time | 7 |
30 days | 1 |