Capitol Hill

Minnesota at Rare Disease Week on the Hill

2 Comments / Advocacy, Awareness, Education, Policy / MLD Foundation / March 21, 2017 / Alberts, Capitol Hill, Minnesota, policy, Rare Disease Week, RDW, Robertson

Last year when I read Kim Brown’s blog on her experience on the Hill for Rare Disease Week 2016, I told my husband, Trevis, that I wanted to go to Washington DC in 2017 and be an advocate for our precious son, Thomas, who left this earth to become an angel in October of 2015. […]

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Rare Disease Week in DC … a parent’s perspective

2 Comments / Advocacy, Compassion, Education, General / MLD Foundation / March 14, 2016 / Brown, Capitol Hill, rare disease, RDD, RDW, Washington DC

For those of you who know me, I have been a teaching computer skills to middle school kids for 17 years!. While I love school now as a teacher, I did not enjoy all aspects of school as a student. My favorite classes were Science and Gym! Social Studies, not so much! Shhhhh….. I really

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MLD Foundation – Very Active This Rare Disease Day (2/29)

1 Comment / Advocacy, Awareness, Education, General, Newborn Screening / MLD Foundation / February 29, 2016 / Capitol Hill, Caucus, legislative conference, NIH, rare disease day, RUSP roundtable

February 29th is Rare Disease Day this year. 1 in 10 – 30 million Americans – have one of the 7,000 rare diseases. On this rare day take a look around – who is it in your circle that has a rare disease? MLD Foundation is very busy this Rare Disease Day not only on

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Minnesota at Rare Disease Week on the Hill

Rare Disease Week in DC … a parent’s perspective

MLD Foundation – Very Active This Rare Disease Day (2/29)

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