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.

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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!

 

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.

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 www.RareDiseaseImpact.com to get more information and view the full Impact Report.

Written by Robert Ostrea

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!

Marie-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