FOR JAKES SAKE : News

We Love Our Jake

Fri, 06 Nov 2009 03:02:39 -0500

Updates on MITO research

Thu, 12 Mar 2009 19:46:29 -0400

SUCCESS TO DATE
The National Institutes of Health (NIH) recently established a cross-cutting research initiative on the mitochondria that cuts across all the NIH institutes (an ROI Project.) In one of his last official actions, former NIH Director Dr. Zerhouni, recently testified before the House Energy & Commerce Committee about the importance of cross-cutting research initiatives as being the key to future advances in science and medicine.
Congress has also expressed its intent to further explore the far-reaching role that mitochondria play in a wide range of diseases. Report language included within the 2008 Labor, HHS Appropriations legislation “…encourages the NIH to intensify its research efforts into primary mitochondrial disease, which is also implicated in numerous other diseases such as Parkinson’s, Alzheimer’s, heart disease, diabetes and cancer. The Committee understands that intensified research into primary mitochondrial disease will help to further understand these other conditions.”
While some steps are being taken, there is a lot more opportunity and promise that could be realized with greater financial resources. Interestingly, research in Europe and Asia is proceeding in a much more intensive manner. Recently for example, China established a mitochondrial university.

HIGHLIGHTS IN RESEARCH
Until recently, the broad range of diseases that may be caused by mitochondrial dysfunction was not well understood or appreciated. A relationship between mitochondrial dysfunction and a wide range of disease states was known to exist, but whether mitochondrial dysfunction was responsible for the particular disease was still in question. This changed with the discovery that mutations of the mitochondrial DNA could cause certain diseases. For the first time, scientists showed that a single nucleotide change in mitochondrial DNA of a mouse led to the development of muscle weakness and progressive heart disease.
Research supporting the link between mitochondrial dysfunction and some of these other common illnesses includes:
• Mitochondrial coenzyme Q10 levels are reduced in patients with Parkinson’s disease and mitochondrial function in these patients is impaired.
• Results of the first placebo-controlled clinical trial of the compound coenzyme Q10 suggest that it can slow disease progression in patients with early-stage Parkinson’s disease.
• These findings are consistent with another recent study involving patients with early onset Huntington’s disease. These patients showed slightly less functional decline in groups receiving coQ10.
• Investigators believe coQ10 works by improving the function of the mitochondria.
• A drug once approved as an antihistamine in Russia improved thinking processes and the ability to function in Alzheimer’s disease patients. The drug works by stabilizing mitochondria.
• Cancers are also associated with defects in the mitochondria. Within the cell, signaling must occur between the mitochondria and the nucleus. When the signaling malfunctions, the defect can cause cancer.
• Researchers discovered that mutations in the mitochondrial DNA may play a role in tumor metastasis and suggests a possible new avenue for the development of a treatment to suppress metastasis.
• Researchers have found a very consistent decline in mitochondrial function that is found in diabetes and pre-diabetes.
• There is increasing interest in the possibility that mitochondrial dysfunction might play an important role in the etiology of autism. A subset of autistic children have already been shown to manifest biochemical alterations that are commonly associated with mitochondrial disorders, and a few have been linked to specific alterations in the mitochondrial genes.
It is clear that research into mitochondrial disease offers hope to the millions who are afflicted with these other common conditions and diseases

HAPPY 5th BIRTHDAY JAKE

Thu, 05 Mar 2009 22:07:29 -0500

KSI FOR JAKE

Mon, 23 Jun 2008 19:34:29 -0400

I've had the opportunity to speak with this wonderful family and can proudly say I’m glad to be a part of KSI. Not only are they speechless and amazed but are very HAPPY to have such blessings come their way.
Each year, the United Mitochondrial Disease Foundation brings together clinical and basic science researchers sharing an interest in mitochondria from all over the world. Participants come from many fields, including biochemistry, genetics, neurosciences, cardiology, cancer, diabetes, nephrology, hematology, pediatrics and aging research.
During the symposium, patients and families meet others who, like themselves, are seeking knowledge. They may be parents or an individual with similar experiences or someone that lives close to them. Patient and family attendees are given many opportunities to meet some of the top mitochondrial specialists from around the world.

The symposium encourages the exchange of information and cultivates networking among physicians, researchers, patients and families. Meeting format typically consists of a four-day scientific program and a two-day patient/family program.The family had all intentions and was ready to prepare for this big event, but due to unexpected turn of events, they’re funds have been depleted. They were able to get an appointment with Dr. Cohen at the Cleveland Clinic in Ohio and could not pass it up for Jake. There, Jake was given the opportunity to meet with one of the best specialist dealing with mitochondrial, neuroscience, and genetics. He was able to get an MRI, EEG, and many other tests to help us understand where his condition is at this point so we can provide the best care to him. It was a long and enduring two weeks for the family and Jake but they’re happy they went.

With that said, KSI has stepped up to help this family in their time of need. We are asking for your donations to sponsor them at this symposium. KSI has sponsored teams to gaming events and profited nothing so why not put the money for a worthy cause. Everyone who donates should feel your heart grow and know that you’re helping someone else.

Kristy Goodwin is the Eastern TN UMDF Ambassador and this will be very beneficial for them due to the advanced knowledge the UMDF has provided. She will be able to come back with so much knowledge that it will be passed onto others who are involved with Jake’s care and to others who are affected. With such heartfelt understanding of this terrific cause, Tennessee’s governor has declared the third week in September “Mito Week”. Kristy rarely misses opportunities to learn and to teach about mitochondrial, so whatever we can do to help, WE MUST DO IT!

Thank you to everyone who has donated! Please continue to spread the word and do it because you want to not because we are asking. It means so much more to us and will to you too.

Any question, concerns, or if you have donate please contact me at

MSN

ksi_lindeknight@yahoo.com

ggtpro.com@gmail.com

Jacob's 4th Birthday

Fri, 23 May 2008 17:11:46 -0400

Jacob's Birthday Party at the Chattanooga Railrod Museum and Trip to the Imax to watch the Sea Creatures on his actual Birthday Day!

Sun, 06 Apr 2008 01:52:21 -0400

MITOCHONDRIAL DISEASE AND AUTISM AWARENESS DAY ON THE HILL

April 15, 2008 - 9:00AM - 1PM
Tennessee State Capitol Building, Nashville, TN

The State of Tennessee has passed a resolution declaring April 15th as Mitochondrial Disease and Autisum Awareness Day on the Hill in Tennessee.

We are encouraging ALL members and their families to come to the State Capitol that day to raise awareness of mitochondrial disease in the Tennessee State Governement.

Families may want to make appointments to meet with their individual representative on that day. To find out who your senator or representative is go to www.legislature.state.tn.us. For general tips on communicating with your representative or senator go to www.legislature.state.tn.us/senate/members/Communication.pdf.

It has also been suggested that you use this time to share your exeriences of living with the effects of Mitochondrial Disease and the obstacles and difficulties you have encountered obtaining the care, resources, and assistance you need as citizens with special needs in the State of Tennessee.

We will have tables set up with story boards, pamphlets, and information about Mitochondrial Disease on the Hill that day. WE NEED YOUR HELP !! If you have not already done so, please send a brief story and picture of you or your affected family member affected by Mitochondrial Disease to midtenmito@yahoo.com so we can finish the story boards and handouts. If you cannot e-mail them, please let us know and we will give you an address to mail them. You may call Courtney at 615-969-1353.

We also will be specifically requesting a Mitochondrial Disease Awareness Week for the 3rd full week of Setember.

We hope that all of you can attend this important event. This is a wonderful opportunity to raise awareness about Mitochondrial Disease in Tennessee !

With Hope for a Cure,

SONYA MURRAY, COURTNEY FELLERS, KRISTIE GOODWIN, and KATHY CORLEY

Website Update

Sat, 29 Mar 2008 00:07:12 -0400

We would like everyone to know we are currently in the process of updating information. Thank you for your patience. Feel free to browse through and we thank you for your interest and support.

HAPPY 4th BIRTHDAY JAKE !! (3-6-2004)

Sat, 08 Mar 2008 00:22:43 -0500

Yes, Yes, I made it to 4! Can you believe it! Watch out because I have so much more mischief ready to let loose! I'm ready, the question is are you? Here I come.... ....The Jake Man; Bubba or Bubba Loo; Jake PooPoo; Jack Jack. Yes, my family has many names for me! I love them all

Eastern Tennessee Mito Group of UMDF

Wed, 23 Jan 2008 18:18:46 -0500

Please Join the Eastern Tennessee Mito Group of UMDF
for an evening with Dr. Bruce Cohen

Bruce Cohen, MD is a mitochondrial disease specialist from the Cleveland Clinic Foundation and a member of the UMDF Scientific and Medical Advisory Board.

Tuesday, January 29th, 2008

7:00 – 9:00 pm
T.C Thompson Children’s Hospital
Probasco Auditorium
Erlanger Medical Mall
979 East Third Street
Chattanooga, TN 37403

RSVP or Questions: Contact Kristie Goodwin at 423-280-4066 or mitomom@charter.net

We hope that you will join us for this wonderful opportunity to learn more about mitochondrial disorders!