Some of these look like a lot of fun, and I can see them being done here!  (We had put our big fall fundraiser on hold, but this could kickstart it!).  If you have any more ideas to share, please add them here, and I’ll add them to the list!

* community walk
* golf tournament or minature golf tournament
* carnival/faire with local companies who want to promote to families
* special “night” with local high school sports event,
* “game show” night which is like a theatre performance with locals as participants with prizes
* Local teams or running groups to take on child as other non-illness related events (ex:  “we are running for child’s-name at URL.com”)
* Local school calendar/neighborhood calendar (candids are good) to sell
* comedy night with local comedians
* concert with local musicians
* Community book sale/flea market with all proceeds going to child (can be online as well)
* Talk to local corporations about taking on child as their “inhouse” charity for the period
* Parent/child community dance/evening at local rec center
* Child Art Show with luncheon
* Sports tournament with local children/families
* Community-wide scavenger hunt with local businesses to donate to draw customers in plus participants pay an entry fee
 
* silent auction/raffle with any of these
* Tshirt sales with any of these
* Bracelet sales with any of these
* Food sales with many of these
 
* Talk to local school booster clubs for ideas
* Talk to local churches for ideas

By 6:00 PMish, it was a completely packed restaurant with at least 1/2 the people coming in carrying the pink or white flyer that was distributed!  It was PACKED!  We had friends come to support us, at least 1/3 of our street showed up, Ethan’s teacher was there, and Hannah’s developmental therapist even showed up!  I also met so many wonderful people who received the flyer from a friend who came to introduce themselves. 

It stayed completely packed until we left at 7:00 PMish.  We never ended up eating there, so we went through the drive through on the way home.  We didn’t stay until the end at 8 PM because Hannah was started to get really tired and a bit stressed out with all the people and chaos.  (She did great though considering how many people she saw that gave her hugs and love!).

It was a huge success in my eyes.  HUGE!  I don’t know how much money was raised, maybe a couple hundred dollars.  But the amount of people that turned up just to support us was the biggest success.  It must have been at least 50 or so families that came to be there for us because they wanted to be there for Hannah.

I do have pictures to share, but we are leaving for Los Angeles in 7 hours, and I better try and get some sleep!!!

I went by there with Hannah and Abby yesterday, and I was able to meet Mica, the marketing director, who is organizing everything on that end.  It was so nice just to be able to thank her for everything she has done and to introduce her to Hannah and Abby.   She was such a sweet lady, and she even gave Abby a bright yellow balloon (which Hannah had been eyeing the entire time!).

Here are the details:
       April 7th, 5:00 PM to 8:00 PM
       Alden Bridge location, Research Forest and Kuykendahl
       MUST bring this flyer for the 20% to be applied

Please share this flyer with all of your friends.  You can even just send them the link at http://www.littlemisshannah.com/chicfila.doc 

Thank you, Chic-Fil-A, for really caring about our community and helping us fight for Hannah!

We had an informal meeting tonight (6 of us) to talk about putting together a fundraiser for Hannah.  I will admit, I felt overwhelmed and incredibly humbled with all of these amazing ideas they were coming up with and willing to do for us.   They came up with ideas like local dinner nights where restaurants will donate a portion of their sales to our fund as well as a community-wide walk/run and silent auction, most likely in September.  I was listening to all these ideas, and it just blew me away! 

I know that Hannah and my kids are worth it.  It is just so wonderful seeing that others are willing to help me fight for my kids, all three of them.  Not only am I working to save Hannah’s life, but I’m working to protect Ethan and Abby from having to see their little sister deteriorate right in front of them. 

I can’t wait to see what comes out of this!!

We were thinking about a walk, a kid’s walk, and perhaps a silent auction and/or raffle, and obtaining local sponsors and donations.  Such an overwhelming concept, but if I can get some others to help me, this is actually doable!!

Even though I feel better that we are still more likely dealing with a type 3 progress of the disease, the bottom line is it still is going to cause her even more neurological decline over the next few years (including a breathing tube and a tracheotomy), and we may still lose her in the next 10 to 20 years if a treatment isn’t found.

So here presents my dilemma…

1.  My definite first choice would be to work with an already active gaucher’s type 2/3 research group and just raise money for them as the infrastructure is already in place.  But I’m still waiting to hear back from the Children’s Gaucher’s Research Fund to see if they are still active in that area, and if so, what is the latest on what is going on. 

2.  Second choice would be to start our own nonprofit and raise money that we can directly give out to researchers who are working on type 2 and type 3.  Main problem would be the “business” end of setting up the nonprofit, maintaining it, etc.  However, it would give us full control over who gets the grant funding.  Being part of a “business” family, this idea doesn’t scare me at all, I’m just not sure how difficult it would be to seek out the medical support needed for this plus find startup money to get this going.  Also time wise, this would become a full time job for me.

If the CGRF isn’t active in the research department anymore, then I have no choice but to do the startup on our own, as I have yet to find any other group that supports type 2 or type 3 research specifically.  The National Gaucher’s Research Fund doesn’t fund type 2 and type 3 research (I wonder if I could change that — 5% of all Gaucher’s patients have type 2 and type 3, shouldn’t they get at least 5% of the funding?).

What to do, what to do…

As all of you that follow our journey regularly know, I am extremely gung-ho on trying to work to find a treatment for Hannah.  I’ll be damned if I don’t do everything in my power to try and save her life!  Admittedly, I can be a bit TOO gung-ho at times and may come up with ridiculous ideas sometimes, but I know in my heart I am doing it for the right reasons.

I don’t know the politics of the reasoning behind it, but the National Gaucher’s Foundation focuses their resarch primarily on type 1 and not on Gaucher’s Disease type 2 or type 3.  Perhaps it has to do with the fact that 95% of the people that have Gaucher’s Disease are type 1.   I really don’t know, and I haven’t really approached them as to why (although I do have a line of communication open with one of the directors who has been extremely supportive and is willing to talk to me next week about it).  So, my beef really isn’t with them.

There is the wonderful organization called the Children’s Gaucher’s Research Fund.  It was started over 10 years ago by a family who lost their son to Gaucher’s Disease, and they focus solely on type 2 and type 3.  I was referred to them by the National Gaucher Foundation.  This father has done amazing work, and I am in awe of what he accomplished in his son’s memory.  But, I have been trying to figure out if they are still a very active organization or if they aren’t really that active anymore. 

I’m so ready to start fundraising and creating awareness, but I can’t ask for money from people for research until I know that research is still being done, and if so, what specifically are we shooting for?  I have HUGE ideas in my head, many of you already know that.  I just hate the fact that I can’t get started.  It’s been over a week or so since I heard from the guy who runs it, and I am sure he is extremely busy, but I need to get started on this.  I feel like I’m already wasting time that could be used to try and save Hannah and the other kids with type 2 or type 3.  And if they are no longer very active, then I want to know so I can start my own foundation so that we can get money to researchers who have already been working on finding treatments for type 2 or type 3.

I hate sitting around not being able to do anything.  I know a few of you have asked about a fundraising button on the side, and as soon as I can find out exactly what is being done, then I’ll feel more comfortable asking for donations for research (as for our personal financial situation, that is taking a far back seat to getting money to researchers)!

I hope to hear back from somebody soon, as I’d rather focus on fundraising and awareness for an existing, already active group who has scientists and researchers in place.  I’m ready to kick some Gaucher’s Disease you-know-what!  I feel like yelling “I’m here!  I’m ready to raise money and create awareness!  Use me!  Abuse me!  Let me help!!”

I have been inundated with so many fantastic offers of help. If I knew what to ask for at this time, I would definitely take you up on it! A few people suggested putting a donations button on our website to help offset medical expenses, but until I know exactly what we will need in terms of therapies, insurance coverage, etc., I don’t feel comfortable doing that. Perhaps in the near future. But thank you so much for caring about us so much that you would offer! I did add the Google ads on the sidebar, so if you find something that interests you, please click on that — it helps!

I have so many ideas to expand my blog. I’m going to ask my web-savvy and blog-savvy friends for help in developing it into a 4-fold purpose:

1.  To follow Hannah’s journey as we WILL find a cure for gaucher’s type 3 and give Hannah a long and healthy life like she deserves.
2. To highlight other children with very rare medical conditions because I’ve realized that unless you have a “common” childhood disease, your situation will not get the exposure it deserves because there just aren’t enough people to give it awareness.
3. To become an information house for parents of other Gaucher’s type 3 kids.
4. To become a starting point for parents who just find out their child has a rare life-limiting or life-threatening condition on how to get help and services, especially since it can be lonely trying to find support when your child has something so rare that hardly anyone has heard of it.

So, if any of my websavvy and blogsavvy friends and visitors want to help with this part of my mission for this blog, please email me at the “Contact Link” above!

]]> http://littlemisshannah.com/2009/01/offers-of-help/feed/ 1 http://littlemisshannah.com/2008/12/working-on-a-game-plan/ http://littlemisshannah.com/2008/12/working-on-a-game-plan/#comments Tue, 30 Dec 2008 06:28:33 +0000 Carrie http://littlemisshannah.com/?p=342 I have started working on getting a plan of action together so if we do get the diagnosis of NPC (or another confirmed diagnosis) that I can have a head start on being proactive. I have no idea what my mindset is going to be if we get a terminal diagnosis — each time I think about it I start to break down, and I know I have to hold it together.


So I have been studying up on our insurance benefits, researching NPC in more detail as well as other lysosomal storage diseases that are included in the testing they are doing with NPC, getting contact details for specialists (and finding out if our insurance covers them), looking into flight prices to the NPC specialist (if it is NPC), vaguely coming up with fundraising ideas for research and non-insurance covered treatments (like the $80,000/year Zavesca/miglustat experimental treatment), getting contact details for the National Institute of Health program (even though I already talked to the coordinator on the phone last month) and the National Niemann Pick foundation coordinator, articles on dealing with siblings of children with a terminal or chronic illness, etc.


I feel very lucky that I have some friends and family members who are willing to help out once we know what we are dealing with. When people ask me “Is there anything I can do?” these days, all I can say is “not now, but I’m sure I’ll be need help once we know.” Whether it be fundraising help, research help, volunteering time for projects, media help, etc., I know that I will take whatever is offered to me — whether it be as little as just telling their friends/family about Hannah’s situation (who knows, they may know someone who knows someone who could be very helpful) or really getting involved in a number of ideas I have. I know that every little bit will help.


If Hannah does have a terminal disease, I cannot sit back and not do anything, you know? I will do whatever it takes, ask for help from whomever has offered, and fight as hard as I can to make sure she gets every opportunity available to live a happy, cognitively intact, and painfree life.


I keep telling myself that there has to be a reason why God brought our little suprise, Hannah, to us after so many years of infertility treatments and adopting Big Boy E and Little Girl A to create our family. Maybe her purpose here is to help find a cure for a disease that currently doesn’t have one yet. I can’t believe God would be so cruel as to bring her to us after all this time (and three miscarriages) only to have her taken away from us.


And if my prayers are answered, all of this will have been unnecessary, as she will have a treatable condition and live a long and healthy life.



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