Robert Ostrea

Robert Ostrea (@LVDad23), co-founder of the Little Miss Hannah Foundation, is Dad to Ethan (12), Abigail (8) and Hannah, who lost her battle to Neuronopathic Gaucher’s Disease at the age of 3. Robert lives with his wife Carrie and their children in Henderson, NV and is an parent advocate of childhood rare disease and special needs issues. You can follow Robert on twitter at LVDad23

Medical and Therapy Equipment Grant Recipients Chosen

March 22, 2013 by
Medical-Therapy Equipment Grant Items

These are just a few of the items that our medical-therapy grant will cover

Our grant recipients for our first round of Medical and Therapy Equipment Grants have been chosen.  Grant applicants will be notified of their status on Monday, March 25th.

Unfortunately, the number of grant requests we received outnumbered the amount of grants we could fulfill at this time, so those that were not chosen will automatically be rolled into the current grant cycle for reconsideration (deadline May 31st, 2013).

We will share more details about these grant recipients and the equipment our amazing supporters have helped us fund after the families have been notified and the equipment is delivered.

Please help us be able to fund more grants in the future.

Little Miss Hannah Foundation joins Rare Disease Lobby Day to Advocate for Childhood Rare Disease Awareness and Funding

March 1, 2013 by
Ostrea and Hempel Families on Capital Hill

Carrie & Robert Ostrea and Chris Hempel representing Nevada’s children on Capital Hill for World Rare Disease Day (Photo by Hugh Hempel)

On Tuesday, February 27, 2013, our Little Miss Hannah Foundation joined a group of 150 patient and parent advocates of rare disease awareness marched on Capitol Hill to meet with legislators.

The event was organized by the Rare Disease Legislative Advocates and meetings with representatives from 45 states were arranged.  Our first goal was to make our legislators aware of the Congressional Rare Disease Caucus and to ask them to join and support their efforts.  A second goal was to voice our concerns about the upcoming Sequestration and how crucial programs from the NIH and the FDA could be affected by across-the-board cuts in our government.

The Nevada delegation consisted of myself and my wife, Carrie, from Southern Nevada representing the Global Genes Project and the Little Miss Hannah Foundation and Chris and Hugh Hempel, from Northern Nevada representing the Addi & Cassi Fund.

Dean Heller meeting with Little Miss Hannah Foundation, Carrie and Robert Ostrea, Chris and Hugh Hempel

Senator Dean Heller and the Ostrea and Hempel families

Our first meeting was held in the Russell Senate Building with Senator Dean Heller’s office.  Senator Heller and his Legislative Aid, Hayley Douglas, were very amenable to our cause.

He has a nephew who suffers from Aspergers and spoke about the frustration his family felt as they were trying to get a diagnosis.  He certainly understood our concerns and assured us that he would work very hard with other members of Congress to solve the Sequestration process, although admitting that it will likely go into effect this Friday.

We provided the Senator with a Rare Disease Awareness lapel pin and he was happy to put it on and wear it in honor of World Rare Disease Day!  We had our pictures taken and made arrangements to follow up with the Senator in his district offices in the near future.  To our delight, the Senator tweeted the picture taken with all of us to his followers and reiterated his support!

We next headed to meet with our group in the Rayburn House Building, located on the opposite side of the Capitol.  It was definitely a very cold day, but we were grateful that the rains that were expected did not show up.  We met up with our fellow advocates in the Rayburn Cafeteria to grab a bite and to describe experiences so far.

Congressmen Joe Heck showing his support for childhood rare disease by holding our "Genes" Ribbon!

Congressmen Joe Heck showing his support for childhood rare disease by holding our “Genes” Ribbon!

From Rayburn, our next meeting was with my Congressman Joe Heck in the Cannon House Building.  Fortunately, there is a complex underground tunnel system in the Capitol, allowing members and visitors to visit each building without leaving and going through security at each point.  The Cannon building is located two buildings over and the walk is not a short one.

Upon arrival at his office, we were greeted by his Legislative Assistant, Ryan McBride, who informed us that the Congressman was in a Committee Meeting and would step out to meet with us.  The Committee was being held back in the Rayburn Building, so off we went back to where we started!

Upon arriving at the Committee Room, we were funneled into a side room and the Congressman came in to meet with us.  I had met the Congressman a few times in the past in our District, so it was nice to see him in D.C.  The Congressman is also a physician and has specific knowledge and interest in the health issues related to rare diseases.

He definitely had a lot on his mind as he was in the middle of a committee meeting and we overheard that he had another meeting with a Senator right after ours.  We definitely appreciated his willingness to make time to meet with us as he could have easily had his aide take the meeting for him as he was clearly very busy.  I will be following up with his local office to schedule a more comfortable meeting to discuss further.

Our third meeting was scheduled with Congressman Mark Amodei, who is the representative for Northern Nevada. Unfortunately, Congressman Amodei was on the floor of the House participating in a vote and was not able to attend the meeting. We sat with his Legislative Counsel, Anna Lake, who took a lot of notes and helped the Hempel family connect with the congressman’s scheduler in the district for a follow up meeting.

Our last and final meeting was with Senator Harry Reid’s office. We met with his Senior Policy Advisor, Carolyn Gluck, who was genuinely interested in our personal stories and provided us with the contact information for the district offices.

She informed us that Senator Reid does not join caucuses due to his leadership status. When we spoke about our concerns with Sequestration, she provided us with a few talking points and indicated that the Senator is waiting for the Republicans to get their acts together to solve the problem.  I was a little disappointed to hear partisan excuses for what’s going on in Washington this week as it doesn’t really matter to me what party or political leaning a government official who is supposed to represent me has. As Majority Leader in the Senate, I expect Senator Reid to provide the leadership he yields to solve the problems facing his constituents as well as the country. I will definitely be following up with his local office to develop a relationship with his staff as it appears that there will be very few opportunities, if any, to meet with the Senator in person given his stature.

Overall, I am very happy with the meetings we had with our legislators and their staff. It was fantastic to see a large group of advocates, representing hundreds of diseases and causes, join together as one to raise awareness and to show Congress that we are a group to be reckoned with!

Getting Ready to “Storm the Congressional Hill”

February 27, 2013 by
Starting our day at the Washington Club

Starting our day at the Washington Club

This morning, we will all meet as a group at The Washington Club to be briefed on our visit to Capitol Hill and then we will head to Congress to deliver our messages.

Our Nevada delegation consists of Robert and Carrie Ostrea of the Little Miss Hannah Foundation, based in Henderson, and Hugh and Chris Hempel of the Addi & Cassi Fund, based in Reno.  Both of our families are very strong advocates in the childhood rare disease space.

We have meetings scheduled with Senator Dean Heller (R-NV) and Senator Harry Reid’s (D-NV) Senior Political Adviser, along with Rep. Heck (R-NV-3) and Rep. Amodei (R-NV-2), with the primary goal of establishing relationships with these members of Congress and encouraging them to become more involved with issues affecting the rare disease community.

I will share our experiences after our meetings today!

Rare Disease Legislative Conference

February 27, 2013 by
Little MIss Hannah Foundation Executive Director Carrie Ostrea

LMHF Executive Director, Carrie Ostrea, meets with other passionate advocacy leaders in the childhood rare disease community

The Rare Disease Legislative Advocates (RDLA) organized a fantastic conference today, held at the historic National Press Club in Washington, D.C., designed to empower patient and parent advocates to be more active in the legislative process.

Presentations by successful advocates such as Anthony Castaldo from the U.S. Hereditary Angioedema Advocates, Emil Kakkis from the Everylife Foundation for Rare Diseases, and Nancy Goodman from Kids v Cancer provided both inspiration and insight to those of us planning a trip to the Hill on Wednesday to speak with our representatives on the importance of rare disease research funding.

We were also given some tips on how to be efficient and effective with our Congressional representatives by staffers from Reps. Butterfield (D-NC), Burgess (R-TX), Lance (R-NJ) and Crowley (D-NY).  It was particularly useful to learn how our email and written correspondence are handled as they are received and how to best to get a member’s attention!

The second half of the day’s agenda involved an in depth discussion on the impending Sequestration and the potential effects to agencies involved with health care research and administration such as the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).  Additional discussion led by Joel White from the Council for Affordable Health Coverage surrounding the Affordable Care Act and the provisions for a revised Insurance Exchange System for those currently uninsured resulted in numerous questions and comments from the audience and prompted the organizers to announce a webinar devoted to the subject in the coming months.

It is clear that the changes involving health care reform are still widely misunderstood and there are opportunities for us as advocates to influence future legislation to ensure that families dealing with rare disease have their issues and concerns known.

This is the advocacy process and why most of us are here in Washington, D.C. this week.  With the help of Soapbox Consulting, a consulting firm specializing in assisting and training non-profit groups on how to effectively lobby Congress, we were provided with scheduled meetings with each of our members of Congress and/or their legislative staff for Wednesday’s Lobby Day.

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