World Rare Disease Day, school event update!

2 Feb by Carrie

Last month, I shared my idea for creating awareness here in Vegas for World Rare Disease Day.   It was to have Ethan and Abigail’s school to wear jeans on 2/28 in recognition for Jeans for Genes day.

I asked a friend for help on how to begin this, and with her help, it has become bigger and more exciting than I could have ever hoped for!

Not only has the principal agreed to let us send out a flyer encouraging the students and staff to wear jeans on 2/25 (school is closed 2/28), but they are going to allow the entire 3rd, 4th, and 5th grade students to create bracelets for the Children’s Rare Disease Network’s 7000-bracelet project!   Can you picture 350 or so elementary students creating bracelets to share their hope for children like Hannah who have been diagnosed with rare diseases?

What is even more exciting is that the Las Vegas Bead Society has offered to volunteer their time and help getting us the beads and bracelet supplies for this event as well as offering volunteers to be in the classrooms to help make the bracelets.

The only ‘not sure’ we have right now is whether or not the school principal will allow media coverage for this exciting day.  I’m keeping my fingers crossed that she will, as it will tie in great with another event that I have in the works (will share later!).   But even if she feels it is not a good idea (students come first), just the fact that she is willing to open up the school to help create this kind of awareness for childhood rare diseases is more than I could have ever hoped for.

Next step is to get a flyer to the principal for approval.  Then we will know exactly how to plan out this event!



~ Filed Under: Hannah's Fight, LMH Foundation

Join Global Genes Project and Get Your Denim Ribbon To Support World Rare Disease Day

27 Feb by Mommy

World Rare Disease Day 2010 will be held on February 28.  Please join the Global Genes Project to help raise awareness for Rare Diseases of all types by wearing denim on Feb. 28 or holding an event in your local area to raise money for your favorite Rare Disease charity.

According to the National Institutes of Health (NIH), 1 in 10 Americans suffers from a Rare Disease — that’s 30 Million people in the US alone! Collectively, Rare Disease is not so Rare!  Join our campaign to help raise awareness by downloading your jean ribbon today and spreading the word!

Here are some facts on Rare Disease that you may not know:

  • A Rare Disease is life-threatening or chronically debilitating disease which is of such low prevalence that special combined efforts are needed to address them (ie. such as neuronopathic Gaucher’s disease)
  • Approximately 7000 different Rare Diseases exist, with countless awaiting researchers to identify
  • Today, Rare Diseases are not being invested in by pharmaceutical companies because of small patient populations and lack of financial incentives to Pharmaceutical and Biotech companies
  • Pharmaceutical companies have only developed treatments for 200 of the 7000 rare diseases causing a healthcare crisis
  • Approximately 75% of Rare Diseases affect children (22.5 million in the US)
  • 50% of the identified Rare Diseases have no foundations, support groups or community support for the families

Let’s never give up Hope! It’s In our Genes!

~ Filed Under: LMH Foundation

Creating a plan of attack with the National Gaucher Foundation

29 May by Mommy

Unfortunately there is a lot that I have been doing for the past few months that I can’t blog about.  But I have been talking to researchers all over the country, different lysosomal storage disease organizations, as well as trying to reach out to the media.  I really only post when it is something that is “nonpolitical” or published. 

Today, I had a wonderful conversation with the head of the National Gaucher Foundation for about 45 minutes.  They have been so incredibly supportive of our fight against GD23, and they have opened their arms wide open to our families.  For the past 10 years or so, there was an agreement that the Children’s Gaucher Research Fund would fund and support GD23 families, and the NGF would fund and support GD1 families.  So, to take us in with such passion and care after a decade, it has just been fantastic.

She and I are going to work together to come up with a sensible plan to get a real formalized research plan and structure together.  She has some ideas that she is going to work on during the next week, and I have a lot of ideas and contacts to bring into the mix.   I really think she and I will work well together.  She supports my passion and drive, yet I feel comfortable enough with her because she is not afraid to be honest with me about how things “work” and keeps my feelings in check as to not to get my hopes up. 

Our concept is instead of having a few researchers here and there doing their own thing, we are going to attempt to create a huge umbrella with all the Gaucher organizations and other related diseases working together,  get a common point where all the research information is kept updated, and work on finding research that could make a difference for kids like Hannah who are here today, still fighting. 

Bottom line, our goal is to get work towards finding a treatment for our kids.

With the power and expertise of the National Gaucher Foundation behind us, I really believe we have the chance to get some real research done.  Keep your fingers crossed…

~ Filed Under: LMH Foundation Tagged With: , ,

National Gaucher Foundation, thank you!

6 Mar by Mommy

Even though the National Gaucher Foundation‘s focus on awareness and fundraising is for type 1 (the foundation was created by a mom of a type 1 child), they have gone above and way beyond anything I could have ever hoped for in terms of trying to create awareness.     I had just asked if they would send my open letter to GD23 families to those famlies on their list that had GD2 or GD3.  What I got instead was, for lack of a better word, WOW!

  • Put Hannah’s photo and our plea to find other families on their front page
  • Running Hannah’s story in their next quarterly newsletter
  • AND, sent out a request to all of their media contacts asking them for exposure for our situation!

Seriously, if this works out, this could bring more awareness to Hannah and the other GD2 and GD3 kids than I could do in a year!

So, I sincerely thank you,  National Gaucher Foundation!

~ Filed Under: LMH Foundation

Today is World Rare Disease Day!

28 Feb by Carrie


The last day of February has been designated as World “Rare Disease Day” to call attention to the public health issues associated with rare diseases. The Project Charity — The Children’s Rare Disease Network has compiled some facts and figures about rare disease that we thought would be of interest. If you have other facts and figures not on our list, please send them to us. We are particularly interested in international facts on rare disease that do not seem to be available.

Please visit the Official Gallery page — Do you see a cute little girl in the third row getting a Cerezyme treatment? 🙂

DID YOU KNOW…

  • Approximately 7,000 rare disorders are known to exist and new ones are discovered each year
  • Rare disease affects between 25-30 million people in the United States and approximately 30 million people in the European Union
  • One in 10 Americans is living with a rare disease
  • Children represent the vast majority of those afflicted with rare disease
  • Approximately 80 percent of rare diseases are not acquired; they are inherited. They are caused by mutations or defects in genes
  • In the United States, rare diseases are defined as those affecting 200,000 or fewer people or about 1 per 1,000
  • Rare disease is often referred to as an “orphan” disease
  • Orphan or rare diseases are often not pursued by the pharmaceutical industry because they provide little financial incentive for the private sector to make and market new medications to treat or prevent them and because there are not enough patients to make research cost-effective
  • Research on rare diseases can often lead to advances in our understanding of common diseases such as cancer, heart disease, diabetes, stroke and other major health problems
  • As a whole, rare diseases represent a large medical challenge. Combine this with the lack of financial incentives to treat or cure rare diseases, and a serious public health issue is created
  • The US Orphan Drug Act (ODA) of 1983 has been one of the most successful pieces of health related legislation ever enacted in the United States. Through a system of tax credits, government grants, assistance for clinical research, as well as seven years marketing exclusivity, the Orphan Drug Act has resulted in hundreds of approved orphan medicines, treating over millions of patients worldwide. Similar legislation has been adopted in Japan, Australia and the UK

~ Filed Under: LMH Foundation

Overdue Thank-You’s…

27 Feb by Carrie

This post has been a long time coming, but as I watch Hannah sitting here playing with her toy and smiling, I know now is a good time to do it. There are so many people I want to thank (I feel like I’m giving an awards speech) for their emotional support, financial support, and just going out of their way to help us deal with our situation with Hannah.

  • Heather C., her family, and friends. From the beginning that we connected (and we haven’t seen each other in over 20 years), she has done so much — researching medical things, fundraising, creating awareness, etc. I feel guilty because it seems she spends almost as much time fighting for Hannah as I do! The least I could do is to share this wonderful children’s book that her husband has published — They are even considering donating a portion of all their books sold to Hannah’s cause! So please, please take a moment to check out his book – Monsters, Monsters, GO AWAY!
  • Erin at LotsToSayBaby.com. She read how we kept losing pacifiers and that Hannah only liked the MAM kind. So she sent us out three of their pacifiers (just like MAMs) without any expectations, just because she wanted to help.
  • Brian at StudioPress.com. Brian donated a copy of his popular wordpress theme to us so that we can build a better blog, a place not only for us to share Hannah’s story, but a one-stop place for other parents of Gaucher’s Type 2 and 3 to find a home. I can’t wait until it goes online!
  • My oldest friend in the world, Julie. We have known each other since we were 4 years old, and when I put out the donation button, she not only was the first one to donate, but she was also the largest donation we have received.
  • My uncle, Larry. He said something to me after we first got the diagnosis, and we were talking about the possibility of having to declare bankruptcy and losing our house because of medical expenses. He said “We won’t let that happen.” Five words. Just the fact that it was said was said meant so much.
  • My brother-in-law and sister-in-law. My sister-in-law has been doing so much research into seeing whether or not her new baby’s cordblood (my new niece) would benefit in any way. She has contacted so many researchers and companies. My brother-in-law started fundraising for us before we even thought about doing it ourselves.
  • My neighbor moms. I reached out to a few neighbor moms here about the possibility of doing a fundraising walk, and every single one of them said they would help. Already this fundraising walk here is taking on a bigger possibility than I could have ever done on my own.
  • My other Moms on a Mission. Karen G., Lindsey S., Chris H., etc. I have learned so much from all of you, and I feel like I have known you all for so long. We are all fighting for our daughters together, and we will succeed.
  • My loyal commentors. There are so many of you that continue to come back and leave not only words of support, but you leave comments for me to think about. The fact you take the time to point out things I may have overlooked or that you don’t think would be a good idea means a lot. It means you are really involved.
  • Those who have donated money. We have had a handful of donations so far ($3200+ towards the mouse!). The fact that you were willing to donate to help us is wonderful. Thank you to Karen P., Julie E., Brian G., Heather C., Stacey T., Margret C., Todd W., Candice T., Carol C., Paula N., Sara M., Kelly D., and Alison D.

There are more people to thank, but Hannah is getting restless and wanting hugs. Gotta take care of that! I should do this more often. Please don’t take it personally if I didn’t mention you, I will do this again! You definitely deserve my thanks!!

~ Filed Under: Hannah's Fight, LMH Foundation
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