Little Miss Hannah’s “Rainbows in the Wind” Event – July 24th!

Click for more details!

Click for more details!

Only two months until our big July event!    Please be sure to join us at Town Square on July 24th, 2013 at 5:30 pm.

Picture it…hundreds of colored feathers blowing in the wind, carrying messages of love to those children, family, and friends that have passed away. On July 24th, you can join our celebration by creating your own messages of love while enjoying music, dancing, and activities for your entire family.

Sponsor Information
 | Event Flyer
Raffle Donation Information

Amazing raffle items include:
*  Four VIP tickets to see Brad Garrett’s show plus a meet-n-greet
*  5 Kids Cooking Classes from Mis En Place
*  Private Wine Tasting Party for 20 from Total Wine & More
*  Golf Package from Anthem Country Club
*  3-Day Car Rental from Enterprise Rent-A-Car
*  2 Day-Passes to Wet N’ Wild
* New Louis Vuitton Mahina Leather Amella Wallet donated by the DiChiaro Family
… and more!


Little Miss Hannah Continues to Impact our Rare Disease Community

Little Miss Hannah and her mom, Carrie Ostrea

Little Miss Hannah and her mom, Carrie Ostrea

Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond
(Reposted from My San Antonio media)

(BPT) – Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face.

“We went through a number of specialists until we found a team that finally looked at my daughter, Hannah, as a patient with unique needs,” says Carrie Ostrea of Las Vegas, Nev. “The process was filled with huge financial challenges. My husband was laid off from his job of five years and we had to continue to pay for insurance just so Hannah could continue getting treatments. The isolation was also incredibly difficult. Some of our family even stayed away from us because they couldn’t handle the situation of us having a child with a rare illness.”

Hannah Ostrea was diagnosed with Gaucher Disease type 2/3, a fatal rare genetic disorder characterized by brainstem dysfunction, loss of primitive functions such as breathing and swallowing, low blood platelets, and enlargement of the liver and spleen. She passed away at age three.

Carrie Ostrea is just one of the 350 million people worldwide who are affected by rare diseases. While Carrie’s experience caring for her daughter – from diagnosis to treatment – was unique, the challenges she faced resonate with many patients and caregivers facing a rare disease. Specific challenges and new insights are featured in a first-of-its-kind Rare Disease Impact Report, commissioned by Shire Human Genetic Therapies. This Impact Report identifies and quantifies the health, psycho-social, and economic impacts of rare diseases on patients, families, and the medical community.

Rare Disease Impact Report

Click to read the 2013 Rare Disease Impact Report

According to more than 1,000 survey responses from patients, caregivers, physicians, and payors who handle reimbursements for healthcare plans and governments/institutions in the United States and United Kingdom:

* It takes more than seven years in the U.S. and five years in the U.K. for a patient with a rare disease to receive a proper diagnosis

* On the journey to diagnosis, a patient typically visits up to eight physicians (four primary care and four specialists) and receives two to three misdiagnoses

* Physicians (both primary care and specialists) often don’t have the time, resources and information to properly diagnose/manage patients with rare diseases, compared to more common diseases seen

* Due to the uncertainty, the lack of available information, resources, and economic strains, rare diseases take a major emotional toll on patients and their caregivers

Rare diseases are conditions that affect a small portion of the population, but are often chronic, progressive, degenerative, life-threatening and disabling. While individual rare diseases are uncommon and disparate, collectively there are about 7,000 different types of rare diseases and disorders that have been identified.

“The new insights featured in the Rare Disease Impact Report reinforce some of the major issues we see in the rare disease space, particularly the obstacles in getting adequate information and ongoing care,” says Nicole Boice, founder and CEO of Global Genes | RARE Project, and advisory board member for the Rare Disease Impact Report. “My hope is that these gaps identified in the report inspire the rare disease community to work together to create a better outlook for patients and their families.”

Visit to get more information and view the full Impact Report.

Little Miss Hannah Goes to Washington!

Senator Dean Heller meets with us and the Hempel Family

It has been an absolutely crazy, wonderful, inspiring, and emotional week!

I won’t go into detail about what we did because my husband has been doing an awesome job blogging about it.  (Definitely recommend reading these).

It was my first time “lobbying” and being able to share Hannah’s story personally with Senator Dean Heller and Congressman Joe Heck was  amazing.   We also had Senator Harry’s Reid’s staff initiate the conversation that we reach out to their local office here in Nevada because they have rare families in need of support, which was very validating and wonderful.

Hannah's 1st visit to the NIH in July 2009 (her second one was March 2010)

Hannah’s 1st visit to the NIH in July 2009 (her second one was March 2010)

The most difficult part of this trip was driving by the Children’s Inn and Clinic Center at the NIH.  As soon as I saw the playground in their backyard, I could feel my body tensing up and my heart starting to break again.   It was all I could do not to break down right there.   The memories

But I have to admit the best part of the week was being able to meet and spend time with some amazing parent and patient advocates.   Being around people “like me” who are so passionate about rare disease awareness has been such a therapeutic experience – they “get me!”

Hannah, my sweet Hannah, we shared your pictures, your story, and your spirit with hundreds of people this weekend.   I am so proud to be your Mommy, to be the one that got to call you mine.   You still continue to inspire people, and your smile continues to capture their hearts.  I love you and miss you, baby girl.

Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness

Written by Robert Ostrea

Robert Ostrea and Little Miss Hannah

Daddy and our Little Miss Hannah

This year, I will be representing the Little Miss Hannah Foundation at the Legislative Conference & Lobby Day, organized by the Rare Disease Legislative Advocates (RDLA), located in Washington, D.C.

This will be a fantastic opportunity to join forces with other rare disease groups and parent advocates to meet with members of Congress to educate legislators on the importance of continued and increased funding for various rare disease research.

We will be in Washington during a particularly politically tumultuous time as the “sequestration” is scheduled to kick in on March 1st. Sequestration refers to mandatory, across-the-board cuts affecting every aspect of government. This provision was put in place in the event the various branches of government do not agree on a formal budget.  At stake are potential cuts to crucial research funding initiatives headed by the National Institutes of Health (NIH) and the Food & Drug Administration (FDA).

Our goal as activists will be to urge our legislators to implement legislation which will protect or increase funding for this needed research.

My personal goal is to create relationships with key staff members and with other patient groups to continue the conversation and keep rare disease awareness in the minds of our representatives. In addition to the Lobby Day, other activities, workshops and World Rare Disease Day events are planned in the DC area.

It should be a very interesting, educating and enlightening experience which I will describe in a daily blog next week!

Scentsy Fundraiser for Little Miss Hannah Foundation

Scentsy FundraiserMarie-Luise Smith, the generous woman who donated 20 Scentsy buddies to our organization last month, is hosting a Scentsy Party for our Little Miss Hannah Foundation! She has offered to donate her entire commission to our organization for each purchase at our LMHF Party.

Order here!

The money raised through this fundraiser will go directly to funding our Medical and Therapy Equipment Grant, a program designed to help provide medical and comfort care items to medically fragile children to enhance their quality of life.


If you would like to purchase an item to be to be given as a special gift to one of our LMHF families, please use the following shipping address:

Little Miss Hannah Foundation
10624 S. Eastern Avenue, #A847
Henderson, NV 89052

Hannah is making her mark!

The Little Miss Hannah Foundation was awarded the Genzyme Patient Advocacy Leader 2012 Award for our school-involved World Rare Disease Day program! We were only one of 9 organizations world-wide to receive this honor along with a grant to help us expand our program.

ethan_speaker We are very proud to receive this award for our Little Miss Hannah’s Jeans for Genes Day school awareness program.   It has been a labor of love, and it could not have been as successful as it has become without the help of Ms. Maggiore, Principal of Vanderburg Elementary School, the Vanderburg PTA, the Global Genes Project, and Cure 4 the Kids.

student-16For the past two years, we have celebrated World Rare Disease Day by working with Vanderburg Elementary School in Henderson, Nevada, to increase childhood rare disease awareness.  Special focus is given to those conditions that are life-limiting. Hannah’s disease is also explained and her life provided as an example of how children with rare disease must live each day.

Our program designed for February 22, 2013, has confirmed the participation of three Henderson schools this year – Vanderburg, Lamping, and Barlett Elementary Schools.   With this grant award from Genzyme, we will be able to increase the number of schools to 10 Nevada schools this year!

 From the PAL Awards website:  “Proposals were reviewed on an expanded list of criteria, so in a sense it was even more challenging this year. Patient organizations met that challenge by bringing forth their best creative ideas, strategic thinking and approaches to sustainability. “