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The MSUD Family Support Group was formed in 1982 in response to a need among aff ected families for support and information.

It is dedicated to:

  • Providing opportunities for support and personal contact for those with MSUD and their families
  • Distributing information and raising public awareness of MSUD
  • Strengthening the liaison between families and professionals
  • Supporting newborn screening programs (now a reality in every state in the US)
  • Supporting research for treatment of MSUD

Much has changed in the 34 years since we fi rst organized. More infants are being identifi ed in the neonatal period and treatment is more standardized. Many of us connect through social media rather than through a newsletter.

To get your input on how this changing environment might aff ect your needs, we conducted a member survey electronically. The aim of the survey was to help us prioritize our initiatives.

We received responses from 116 individuals. Here are the results:

How important do you feel each of the following areas is for the MSUD Family Support Group to be involved in?

  Less important Important Very Important
Identification of metabolic specialists 5.26%
6
35.96%
41
58.77%
67
Research for treatment/cure 0.88%
1
8.77%
10
90.35%
103
Public health policy advocacy 11.61%
13
31.25%
35
57.14%
64
Connecting families affected by MSUD 1.75%
2
22.81%
26
75.44%
86
Raising public awareness of MSUD 6.19%
7
27.43%
31
66.37%
75



How well do you feel the support group is meeting your needs in each of these areas

  Poor Fair Good Excellent
Connecting families affected by MSUD 1.74%
2
9.57%
11
46.96%
54
41.74%
48
Communicating with members 3.48%
4
10.43%
12
47.83%
55
38.26%
44
Providing updates in care 0.00%
0
16.67%
19
50.00%
57
33.33%
38
Advocating for issues relating to rare diseases 1.75%
2
19.30%
22
54.39%
62
24.56%
28
Supporting research to develop treatment strategies/cure for MSUD 2.61%
3
12.17%
14
51.30%
59
33.91%
39
Improving public awareness of MSUD 3.54%
4
33.63%
38
42.48%
48
20.35%
23



Do you read the newsletter and how helpful do you find it?
89% responded that they read the newsletter and 94% reported that they fi nd it helpful or very helpful.

If you/your child has been transplanted, do you still fi nd value in belonging to the support group?
64 individuals responded to this question. Of those, 61% responded that they do fi nd value in continuing to be a part of the support group.

Have you attended a symposium? If not, why?
55% Yes
45% No

Of those who have not attended a symposium, 56% reported expense and 33% reported time constraints. Many commented on the difficulties of travel, especially from other countries.

We asked for suggestions for how we can strengthen our organization and received 36 responses.
The board is carefully reviewing all of these responses.

Remember, we need an active membership to be able to follow through on important initiatives. If you feel that something is important, please consider volunteering to help.





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