Minnesota at Rare Disease Week on the Hill

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.  After seeing all of the emails from Dean and Teryn Suhr of MLD Foundation and after visiting in person with them and Christine Hoffman when they all made a trip to Minneapolis, I applied for a stipend through EveryLife Foundation and soon I found myself booking flights for DC.  I convinced my husband Trevis to come as well and the next thing we knew we were on our way to DC not really knowing what kind of experience that we would have.

We arrived into DC in the afternoon of Monday, February 27 and met up with Dean and Teryn Suhr and Eric and Christine Hoffman, fellow MLD parents, for the viewing of Rare Disease Documentary Screening of Up For Air at the United States Naval Heritage Center.  The movie was very nicely put together regarding an individual who was living with Cystic Fibrosis, and his journey through the disease.   After a late dinner and lots of travel, we were ready for bed as we knew we had another busy tomorrow learning about all of the policies that we were advocating for in our meetings on the Hill on Wednesday.

Tuesday morning we went to the day-long RDLA Legislative Conference, hoping they would teach us what to say to our Congress men and women on Wednesday.  When we got there we were inundated with a lot of information about current policies affecting the rare disease community.  Specifically they talked about what needed to be included in the Affordable Care Act Replacement Plan to not harm rare disease patients going forward, the Rare Disease Congressional Caucus and its importance, rationale for increased funding related to the National Institute of Health (NIH) and Federal Drug Administration (FDA), and the support of the OPEN ACT.  By the end of the day we felt prepared for our meetings with our Congress men and women on Wednesday.  In the afternoon we were able to go to a breakout session where they taught us how to tell our story which included our plug for why we needed their support within 90 seconds.  We also got to meet other constituents from the State of Minnesota as we would spend most of the day with them on Wednesday telling our story and making our asks of our state Legislatures.

That evening and during the day we were able to meet other MLD families as there were 14 of us representing MLD this year.  It was pretty amazing and let me say our MLD families are awesome, I might be a little biased!  We learned a lot on Tuesday and we were ready for the Hill on Wednesday.

Wednesday, March 1 we got up bright and early for breakfast before they sent us off to the Hill.  We met up with our MN team right after breakfast and headed to our first meeting.  We all had our 90 second elevator speech ready for our meetings with our specific “asks”.  Brett Robertson, a MLD dad, was in our group from MN, but even though we had similar stories our “asks” were very different, which made our meetings even more impactful.  Everyone in our group had their opportunity to present their story and articulate their “ask” to the congressional staffer and/or the Representative or Senator.  We were most interested in obtaining funding for the NIH and FDA, so that we can continue to search for cures for this awful disease.  At every meeting that we had, we left a letter that told Thomas’ Story in more detail along with our specific asks, which of course had pictures of our sweet boy.

As we moved from meeting to meeting we were lucky to get our own tour of the House side of the Capital with former Congressmen Brian Baird from the state of Washington.  Brian is a Board Member of the Pulmonary Fibrosis Advocates as his father passed away from this disease and Paul Fogelberg, who is from MN, the founder of Pulmonary Fibrosis Advocates was also in our group. Paul and Brian have been on the Hill many, many times advocating for rare diseases, which made our meetings even better as they both were able to add pertinent color to emphasize to the Staffer or the Congressmen important issues worthy of their consideration as it relates to the rare disease community.  Our team was a well-oiled machine by the time we went to our last meeting.

Before we headed back to our hotel room, we attended the Rare Artist Reception where we were able to view spectacular art created by artists with Rare Diseases.  We were amazed at the talent that we have in the rare disease community.  Each piece had a unique story, which made it even more amazing.

Overall Rare Disease Week on the Hill was incredible and truly life changing.  It was a very emotional couple of days, but knowing that we were advocating for not only our MLD families, but also the Rare Disease Community as a whole gave us a sense of accomplishment and us asking ourselves what more we can do for the rare disease community.  Thomas is no longer with us, so we now have to continue his legacy and to be his voice for all of the other kiddos and families in the United States that are fighting rare diseases.  We need to continue to fight for cures!  I would encourage all of the MLD families to start planning now to make it to Rare Disease Week on the Hill in 2018.  It was an amazing experience!

Laura & Trevis Alberts

Rare Disease Week in DC … a parent’s perspective

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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 had no interest in our government.  Politics…….yuck!!!!!

So you can imagine my terror when Michelle Pierce, one of my best friends and another MLD Mom, sent me an email inviting me to join her on a trip to DC for Rare Disease Week.    Buzzwords like:  “Legislative Conference” & “Day on the Hill” were making me wish I would have paid more attention in Social Studies class!  However, knowing that we would have a blast together as we always do and knowing we could help our MLD Family was an honor I was not going to pass up.

On the Sunday before I departed for DC, I got a very unfortunate phone call from Michelle saying that Emily had a fever and was not feeling well.  Monday poor Emily was feeling worse and was admitted in the hospital.  You all know as MLD parents, sometimes our little ones have a different agenda.  (Please say a prayer for Michelle, Emily and their family as of today they are still in the hospital.  http://www.caringbridge.org/visit/emilypierce )

Now it turned out that I was headed to DC sans-Michelle. . I arrived late Monday night, met with Dean for a bite to eat and to discuss the agenda for the next two days.

Kim Brown - RDW-DC 2016

Kim Brown & Dean Suhr sporting matching MLD butterfly jewelry – on Capitol Hill in Washington DC 2016 for Rare Disease Week.

Tuesday was our “learning” day.  We attended the Legislative Conference from 8:30am – 5:30pm.  The day started out with an AMAZING breakfast followed by the Welcome which was conducted by our very own Dean Suhr!  (Dean, you did a great job by the way 🙂 …. we need to get you a bell for the next MLD Family Conference 😉 )

 

The rest of the morning there were discussions on the upcoming election, appropriation process, and information on the FDA, PDUFA, and NIH (a lot of acronyms).

Before we broke for lunch we discussed the OPEN Act Accelerating Cures and Treatments, the Rare Disease Caucus, Patient Focused Impact Assessment Act, and the Rare Disease Fund Act of 2015.  These were the very things we were going to “Ask” for in our meetings on Capitol Hill the following day.

After lunch we discussed strategies on how to attend meetings.  Topics discussed were: How to build relationships with members of Congress, sharing our advocate stories, congressional scorecards, hill asks and leave behinds.

They put on a very entertaining and informative skit on what to not do and what to do at our Congressional meetings followed by breakout sessions.

New Jersey The final step of the conference was to break out into our groups that would be visiting senators and congressman from our state.  It was amazing getting to know the group of advocates from NJ.

Some advocates were parents like me, some were grandparents, there was a mother and daughter and some amazing people who had rare diseases themselves.

The next day was the “march on the hill”.  We had an agenda to meet with Senators and Congressmen from NJ.  Mostly we met with their office staff.  Never underestimate the staff personnel.  They are the right hand men and women of your senators and congressman.  They hear advocate’s stories and direct connections to the things we are trying to pass on the hill and report back to them with a “this is a worthy cause, let’s endorse” or  “this may not be the direction we want to take”.

After meetings all day, I have to say each and every congressional representative we met from NJ was open and receptive to the things we were fighting for.

cookie We even had an unexpected meeting with a member of Congress during lunch.  He joined the rare disease caucus right on the spot and endorsed the Open Act.  Pretty amazing stuff.  (As an inside joke, all credit goes out to a cookie…. ask me about it the next time you see me!).

Overall, it was an honor to increases awareness of MLD as a rare disease and to represent all of you as a MLD mom on Capitol Hill.  I strongly recommend all of you to participate if you can next year!

~Kim

p.s. [from Dean] … Thanks, Kim.  I was thrilled to have you there, too! I look forward to a bell – and a cookie at our upcoming MLD Family Conference (July 15-16)!

(Check out Kim’s blog for her daughter Reese here). Emily Sevcik, a MLD mom from North Carolina was also there.

Rare Disease Day is the last day of February. Rare Disease Legislative Advocates, a program of EveryLife Foundation organizes the week, they offer modest travel stipends, and take care of all of the logistics.  Do plan to join us in 2017.  It’s important (and fun) work.

 

 

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

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 behalf of metachromatic leukodystrophy, but also on behalf of all with rare diseases because at helps the rare disease community will help MLD along our journey.

Monday – Rare Disease Day at the NIH

  • One of 40 exhibitors and poster presenter at this very important Advocacy Day.  The poster is about the RUSP roundtable, and initiative focused on improving newborn screening.
  • RUSP Roundtable is a MLD Foundation organized, hosted and sponsored event that is a unique gathering of key opinion influencers in the newborn space representing clinicians, state & public health, advocates, genetics, genomic sequencing, industry, ethics, privacy, and more to improve newborn and childhood screening and health.
  • We are pleased to be the inspiration for newborn screening legislation just  introduced in California by EveryLife Foundation that will require California to quickly implement new screens as they are approved by the federal ACHDNC.  Right now each new disease requires legislative authorization.  This “Once and Done” legislation will be model legislation for all the other states.

Tuesday – Rare Disease Legislative Conference

  • Dean is the host and moderator for a day-long legislative training conference for nearly 300 advocates from e very state who have gathered in Washington DC.  This is his 3rd year in this role and he continues to make sure every advocate walks away better informed and more confident as they impact policy for all of us.
  • Newborn Screening breakout session presenter.  Dean is responsible for sharing a full overview of the process, status, issues, and opportunities in Newborn Screening.

Wednesday – Rare Disease on Capitol Hill

  • 300 advocates will split up to meet with all of their Congressional representatives using the training from Tuesday’s legislative conference to advance Rare Disease awareness and policy.
  • Dean is leading a group of advocates representing the Pacific Northwest for six meetings with our Congressional representatives.

Thursday – Rare Disease Congressional Caucus

  • The House has had a Rare Disease Caucus for quite a number of years.  New this year is a Senate Rare Disease Caucus.  The Senate has very few caucuses so this in itself is rather unique.
  • Dean will be attending the Rare Disease Caucus meeting to share the Rare Disease voice.

The month of February is Rare Disease Month – our time to increase awareness of the possibility of Rare Diseases as a diagnosis.  Please do your part – share these posts and plan a special event for Rare Disease Day.


Rare Facts – what we’ve learned so far …

 

 

 

Febru rdd-logo-transparent ary is Rare Disease month, culminating on February 29th – a Rare Day indeed – which is Rare Disease Day.

 

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  1. Harvey, A. M.; et al. (1979). Differential Diagnosis (3rd ed.). Philadelphia: W.B. Saunders
  2. Imperato, Pascal James (1979). Medical Detective. New York: Richard Marek. ISBN 0-399-90058-6
  3. Sotos, John G. (2006) [1991]. Zebra Cards: An Aid to Obscure Diagnoses. Mt. Vernon, VA: Mt. Vernon Book Systems. ISBN 978-0-9818193-0-3
  4. https://www.sireninteractive.com/sirensong/findzebra-rare-disease-search-engine