I'm long overdue for some posts - Christmas, New Year's, fun stuff... those will come soon. But for today, I wanted to share a choice we've made for 2013.
As many of you know, the United Mitochondrial Disease Foundation has an annual Energy For Life Walk and fundraiser each year. Last year our team "Where There's a Will, There's a Way" raised nearly $25,000! A HUGE amazing gift. Additionally, many donations were received in Will's honor since he was diagnosed on July 5, 2011. THANK YOU.
This year, we will be participating in the Energy For Life walk, but have decided to ask our family, friends and all those who love Will to give financial contributions to support our UT Mitochondrial Disease Center of Excellence and its new Leigh's disease clinic.
The UT Mitochondrial Disease Center of Excellence is a non-profit and it is diligently working to raise money to add additional resources, technology and "brain power" to help patients with Leigh's disease live a better quality of life, and ultimately a cure. Currently, the center treats 400+ mitochondrial disease patients from around the United States and recently, there has been an increase of Leigh's patients - likely the largest group treated by the same doctor in the US. A lot of commonalities as well as abnormalities for Leigh's patients can be harnessed and shared if given the proper attention and support.
Why you ask wouldn't we directly support both organizations? We do support both - physically and socially, but for the short-term while the UT Mitochondrial Center of Excellence builds this program that will directly and immediately help Will, we're asking for financial contributions to go to the Leigh's clinic in lieu of contributing to other organizations.
Contributing to the Leigh's clinic will have DIRECT and IMMEDIATE impact for Will. The thought of having a doctor and clinic completely dedicated to Leigh's gives us tremendous hope for Will and his quality and length of life.
So, you might be wondering how to contribute? This Leigh's clinic program is in its infancy (as are many of its patients) Dr. Koenig and her team are working with its hospital affiliation, Memorial Hermann, to put together an online portal for people to electronically contribute. I wanted to wait to announce this till the website was ready, but so many people have been asking about our walk team hence this post...
Donations can be made to "The Memorial Hermann Foundation" and should be mailed to:
The UT Mitochondrial Center of Excellence
6431 Fannin St. MSB 3.151
Houston, Tx 77030
In the subject line you must put: UT Mito / Leigh's Clinic
For further information on making donations, people can call the clinic at 713-500-7164 and press option 1 to speak with Melissa Knight. It is tax deductible and you will receive an acknowledgment letter from the Memorial Hermann Foundation, as well as a personal letter from the clinic. If it's easier for you to bring a your contribution to me or Neil directly - no problem! We will drop it off on site - we're there enough already :-)
So, to recap:
- please join us for the Energy For Life Walk if you'd like to on Saturday, Feb 2 at 1 p.m. at Sam Houston Park in downtown Houston. If you've already donated, no worries! The money will be put to very good use. You can register here: http://www.energyforlifewalk.org/faf/search/searchTeamPart.asp?ievent=1040611&lis=1&kntae1040611=1311EA3C036746FD953A80EBC65DD11C&team=5316747
- please consider making a donation to the UT Mitochondrial Center of Excellence instead of donating to any other mito-related organization or event for the short-term. Website coming soon for easy online giving.
- we'll be doing a post-walk after party again this year. Likely at Berryhill in the Heights. I hope you can join us to celebrate Will and all his amazing accomplishments.
- later this year, an amazing group of our friends is organizing an event to benefit the Leigh's clinic so stay tuned for more info there
I know this is kind of confusing and weird, but we know it's the right thing to do for Will, please feel free to email me with any questions, firstname.lastname@example.org.
And finally, thank you from the bottom of our hearts. Gifts of time, treasure and talent come in many different ways and we treasure each one.