FighterMom Community Community Blog List http://www.fightsma.org/fightermom/forums/index.php?automodule=blog Community Blog List Syndication Fri, 13 Aug 2010 02:41:32 -0700 bh@itseg.com (FighterMom Community) IP.Blog 60 FighterMom Blog: News and Information about Disease Advocacy - Fighter Mom Profile: Lori Sames, Founder and Executive Director of Hannah’s Hope Fund
After suspecting something was wrong and taking her daughter Hannah for multiple medical evaluations, Lori Sames finally received devastating news. Hannah had Giant Axonal Neuropathy (GAN), rare inherited genetic disorder which progresses slowly as neurons degenerate and die, and causes a gradual decline in mental function, loss of control of body movement, and seizures.

After the passing through “a state of shock, anger, disbelief, grief, total devastation,” the Sames family realized that “with any disease, someone has to be the FIRST…the first to raise funds and awareness and pull the medical community together to find treatment.” With this new purpose, Lori, with her husband Matt, started Hannah’s Hope.

Learn more about Hannah’s Hope by visiting: http://hannahshopefund.org. Help Hannah’s Hope compete for $250,000 by voting in the Pepsi Refresh Project every day in August.]]> Thu, 12 Aug 2010 12:29:43 -0700 FighterMom Blog: News and Information about Disease Advocacy - Fighter Dad Spotlight: Bringing Cycling to Everyone
This time we're actually profiling a Fighter DAD. Hal Honeyman is the founder of ProjectMobility.org, a program designed to help those with limitations enjoy the freedom and fun of cycling. You can learn all about this incredible program by viewing the YouTube video at the link below.

http://www.youtube.com/watch?v=sZZFZEFWTtE]]> Tue, 20 Jul 2010 10:10:57 -0700 <![CDATA[FighterMom Blog: News and Information about Disease Advocacy - Happy Mother's Day, Fighter Moms]]> For every mother fighting childhood genetic disease:
Happy Mother’s Day, Fighter Mom.

Thank you.

From Fight SMA and the Fighter Mom program



]]> Sun, 09 May 2010 12:39:55 -0700 <![CDATA[FighterMom Blog: News and Information about Disease Advocacy - Liam's Links Hosting Inaugural Golf Tourney]]> Liam's Links, a new Richmond, Virginia-based organization, is holding its first fundraising golf tourney next week, and is looking for golfers and additional sponsors. The 501©(3) not-for-profit organization was created to raise awareness and research funding for SSADH (Succinic Semialdehyde Dehydrogenase) deficiency, a rare pediatric neurotransmitter disease.

Liam's Links was founded by Jay and Diana Strickland, another "Fighter Couple" like our own Joe and Martha Slay. Diana sent this as part of her note asking us to post the information:

On May 3, 2010, the Liam’s Links inaugural golf tournament will begin our family’s mission to raise awareness of SSADH and to help fund research for neurotransmitter diseases. On behalf of Liam and the children and families affected by this disease, please join us on the links and help become a catalyst of hope for their future.

For more information on Liam's Links, SSADH, and the 1st Annual Liam's Links Golf Tournament, visit the Liam's Links web site.]]> Tue, 27 Apr 2010 10:43:03 -0700 FighterMom Blog: News and Information about Disease Advocacy - Upcoming NINDS Nonprofit Forum
The forum will be held in the Lister Hill Auditorium on the NIH main campus. Additional details about the meeting will be available in the coming weeks.

Those individuals who plan to participate should contact Andrea Frydl in the NINDS Office of Communications and Public Liaison at 301-496-5751 or by e-mail at: nindsvoluntaryforum@mail.nih.gov.]]> Thu, 08 Apr 2010 13:05:39 -0700 FighterMom Blog: News and Information about Disease Advocacy - Fight SMA and Fighter Mom Hoping for your Help to Make a Miracle The following post is from Martha Slay, President of Fight SMA. Fight SMA is the organization responsible for the Fighter Mom program.

-----------------------------

There is someone in the circles of people closest to you who would be delighted - in fact, honored - to make a major gift to FightSMA (www.fightsma.org). This may be a distant relative, a college friend who has "done well" or a business relationship who has become a friend.

For a person of means, a gift of $50,000 or even $100,000 is realistic. It's not realistic for many of us (okay, pretty much ALL of us), but for someone who CAN make such a gift, it's a blessing to them to make it. We have a responsibility, to the children we love and to the children we've met who are fighting SMA, to push through our own feelings of awkwardness or inadequacy - and we all have those feelings…all of us - and MAKE THE ASK.

So, take a deep breath. Or exhale a sigh of resignation…and read on.

And, hey, why are we on this planet anyway? To live cautiously and timidly? Are we supposed to end your days, saying "I should have…"

Hardly.

Listen to Shakespeare:

There is a tide in the affairs of men,
Which, taken at the flood, leads on to fortune;
Omitted, all the voyage of their life
Is bound in shallows and in miseries.

So, the "Three Questions to Ask Yourself to Reach the Miracle."

1. Who have I avoided sitting down with and making the hard ask, even though I KNOW they can make a very large gift? You may have asked them before, and after an uncomfortable and long silence, a few avoided glances, and some clearing of the throat, they said they'd think real hard about it and that was the last of it. It may have been five years since you've brought it up. But you need to do it again. They may have softened. They may be in a better place to consider it. If you don't ask, you don't get. Think about this person, then think of an approach. Talk through your approach with someone who knows you well and can bolster your confidence.

2. If I made a list of possible people to contact, have I exhausted all my circles? I bet you can come up with three good, realistic prospects. Think back to high school. Did you know that the quiet kid in the cadet corps who couldn't play Taps has made several million dollars on Wall Street? Find him. Get back in touch. How about Uncle Harry? He just sold his carpet cleaning company. It wasn't huge, but he cleared about $1.5 million. What's he going to do with the money? Let the IRS have it? Stop him from dumping it down that rat hole. And what about acquaintances at church, in the Rotary? At work? Make a list of 10 relatives. Who do THEY know?

3. Have you visualized the amount of money you're going to get? Think about fifty one-thousand dollar bills. Think hard about them. See those crisp, pretty bills in a suitcase, or in a big grocery bag. Enjoy the fact that you're going to get someone to give them to you, for the most important cause of your life. In your mind, toss the bills up into the air and watch them flutter to the ground. Giggle about it. IT'S JUST MONEY, AND YOU CAN GET IT. Figure out an amount you want to ask for and make it feel real.

You can do this.]]> Mon, 21 Dec 2009 06:05:53 -0800 <![CDATA[FighterMom Blog: News and Information about Disease Advocacy - Fighter Mom Spotlight: Family Using Child's Notes to Fight Brain Cancer]]>
Elena Desserich died two years ago at the age of six, from brain cancer. During her fight with the disease, she wrote notes for everyone in the family, and hid them around the house. Those notes weren't found until after her death. One of the notes is pictured below. The Desserich family has published many of these journal entries, along with the notes, in a book called "Notes Left Behind". Here's a description of the book from the website www.notesleftbehind.com...

QUOTE
Written through the eyes of her parents, Keith and Brooke Desserich, as a remembrance for Elena's younger sister, her daily story tells one of humility and inspiration as she lives each day, one at a time. In her short time she painted a masterpiece that would hang in an art museum, she accomplished a truly spectacular series of wishes that she alone created, and she inspired a cause that remains today to help children everywhere in their fight against brain cancer.


Proceeds from the sale of the book go to the family's nonprofit, The Cure Starts Now. You can also read about the family on the TODAY Show website, here: http://today.msnbc.msn.com/id/33505113/ns/today-today_books/

The Desserich family is also using Twitter in a novel way, by suggesting people use the micro-blogging service to leave their own notes for people. Learn more here.

This is a story that will literally break your heart, but we thank the Desserich family for sharing Elena with us.

]]> Wed, 28 Oct 2009 07:28:47 -0700 FighterMom Blog: News and Information about Disease Advocacy - Tips on How to Give Money Can Help You Raise Money Bankrate.com that may help. The article, 5 ways to give big on a shoestring budget, gives advice for potential donors, such as:
  • Form a giving circle
  • Donate services
  • Budget micro amounts
  • Search and shop consciously
  • Create a social event
It isn't hard to see how a Fighter Mom can turn this donor advice around and use it to her benefit. For instance, suggesting to supporters who say they aren't able to give money right now, that they might give a very small amount or donate their services.]]> Wed, 21 Oct 2009 11:03:06 -0700 FighterMom Blog: News and Information about Disease Advocacy - Fighting Back Podcast #22 - This Side Up (Kyra Oliver)
We have a great profile of a true Fighter Mom in this edition of Fighting Back Podcast. Kyra Oliver's four-month-old son, Hayes, died in 2002. The cause of death was given as Sudden Infant Death Syndrome, or SIDS. Within days of his death, as Kyra was still fighting through the anguish, she founded the Hayes Foundation to raise awareness of SIDS. In 2006, she launched a campaign to educate mothers and caregivers that the safest way for infants to sleep is on their backs. The campaign began in Kyra's home state of Virginia and is now spreading to other states.

Kyra continues her fight, and is now planning a fundraiser in her home city that combines her desire to educate about how to avoid SIDS and her love of competitive running. The Capital 10-Miler is being held on Saturday, October 3. For more information, visit http://www.rrrc.org.

You can listen to Fighting Back Podcast #22 by using this download link, or by subscribing via iTunes. You can also use the Fighting Back Podcast Feed in your favorite feed reader. Thanks for listening!
]]> Thu, 24 Sep 2009 10:58:47 -0700 FighterMom Blog: News and Information about Disease Advocacy - A new place to play
To view the new incredible play area, follow the links below!

Equal Play (from SF Gate newspaper)
SF Playground Built with Disabled Children in Mind (Video from KRON TV)

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