Search


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.





Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

Read More

NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

Read More

Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

Read More

Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

Read More

MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

Read More

The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

Read More

19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates