Further

UPDATE on previous post

HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution has been put on the agenda for

Friday, February 25th - 8 a.m.

25o State Capitol, Utah State Capitol Complex

We are getting further along in the process to have an official Mitochondrial Disease Awareness week in UT during the week we are planning the Energy for Life Walk.

You are invited to attend and show your SUPPORT for HJR35! If you are unable to attend, please take a moment to email the committee members. Contact them in advance of the meeting and ask them to support the resolution. If you have a personal story relating to Mitochondrial Disease, include it. You might even like to include a photo. Remember to stay positive and polite.

Senate Health & Human Services Standing Committee:

"Sen. D. Chris Buttars, Chair" dcbuttars@utahsenate.org,
"Sen. Allen M Christensen" achristensen@utahsenate.org,
"Sen. Patricia W Jones" pjones@utahsenate.org,
"Sen. Mark B Madsen" mmadsen@utahsenate.org,
"Sen. Stuart C. Reid" screid@utahsenate.org,
"Sen. Luz Robles" lrobles@utahsenate.org,

Thanks to everyone for the help, whether it is contacting Legislators or coming up in person. I truly am excited to see the way citizens can come together and have such an influence in our community!

During the House Committee meeting on this Resolution, Sean and Michelle Agnew were able to bring in their 2 year old daughter, Maggie - who has been diagnosed with mito- and share insights of how devastating Mitochondrial Disease can be. The progressive nature of mito is really taking a toll on Maggie. Please keep the Agnew Family in your thoughts and prayers, as increasing support for affected individuals and their families is one purpose for having this Resolution.

If you are looking for another way to be involved, and the legislative process is just too intimidating, consider helping with the SAM project, in honor of Samuel McCluskey who died March 26, 2008, of mitochondrial disease .

Advancing

On to the Senate Health & Human Services Committee

HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution has been through the House Health & Human Services Committee and passed the House Floor. Now it has been assigned to the Senate Health & Human Services Committee. It is not on an agenda yet, so I'll have to update later about when you can be at the Legislature to show your SUPPORT for HJR35.

Could you please take a moment to email the committee members? Contact them in advance of the meeting and ask them to support the resolution. If you have a personal story relating to Mitochondrial Disease, include it. You might even like to include a photo. Remember to stay positive and polite.

Senate Health & Human Services Standing Committee:

"Sen. D. Chris Buttars, Chair" dcbuttars@utahsenate.org,
"Sen. Allen M Christensen" achristensen@utahsenate.org,
"Sen. Patricia W Jones" pjones@utahsenate.org,
"Sen. Mark B Madsen" mmadsen@utahsenate.org,
"Sen. Stuart C. Reid" screid@utahsenate.org,
"Sen. Luz Robles" lrobles@utahsenate.org,

I want to also thank Rep. Ken Sumsion and Sen. Howard Stephenson for being the sponsors of this Resolution. I appreciate their willingness to help move forward a Resolution with such an impact for families in Utah who are affected by this condition. One family in particular, Sean and Michelle Agnew, have even involved Maggie in presenting this bill to the Legislature, giving legislators a glimpse at how devastating Mitochondrial Disease can be. I encourage you to continue to support the Agnew Family, as well as the efforts to have this bill passed during this session.

I also want to thank Andrew Davis who has been very helpful to keep me informed on the progress of the bill, and given me insights about what each new development means and what to expect as the bill progresses. He is interning for Rep. Biskupski, and even with being so busy has taken time to be concerned about this Resolution and those of us hoping to see it through the legislature before the session ends.

Progress

Utah's HJR35 Update - One Step Closer!

Monday was a big day for HJR35! Things turned out well after presenting the bill in committee. Thanks to those on the House Health and Human Services Committee who voted unanimously to pass HJR35 out favorably! It also was unanimously recommended to go on the Consent Calendar. That moved it more quickly to the House Floor, where it was heard today and passed (with the only dissenting vote from Rep. John Dougall and 8 absent).

Now to see how quickly it goes from here. Not sure if it will be assigned to a Senate Committee or if it will go to the Senate floor next. Sen. Howard Stephenson has agreed to sponsor it once it gets to the Senate.

For those following from Utah, if you haven't already asked your Senator to support the bill, please kindly do so ASAP!

You can find your Senator using this tool: http://le.utah.gov/GIS/findDistrict.jsp

To all who have taken time to contact legislators, thank you! This is exciting progress in helping bring more awareness about a very difficult condition.

Update

UPDATE on previous post

HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution has been put on the agenda for

Monday, February 14th - 4 p.m.

25 House Building, Utah State Capitol Complex

It is the last item on the agenda, so hopefully it will be addressed before the committee runs out of time and adjourns. You are invited to attend and show your SUPPORT for HJR35! If you are unable to attend, please take a moment to email the committee members. Contact them in advance of the meeting and ask them to support the resolution. If you have a personal story relating to Mitochondrial Disease, include it. You might even like to include a photo. Remember to stay positive and polite.

House Health & Human Services Standing Committee:

"Rep. Paul Ray, Chair" pray@utah.gov,
"Rep. Evan J. Vickers, Vice Chair" evickers@utah.gov,
"Rep. Ronda Rudd Menlove" rmenlove@utah.gov,

"Rep. Rebecca Chavez-Houck" rchouck@utah.gov,
"Rep. Tim M Cosgrove" tcosgrove@utah.gov,
"Rep. Bradley M Daw" bdaw@utah.gov,
"Rep. Dean Sanpei" dsanpei@utah.gov,
"Rep. Christine F. Watkins" cwatkins@utah.gov,
"Rep. David Clark" dclark@utah.gov

Thanks to everyone for the help!

Request

Utah friends (or if you have friends in Utah you can pass this on to)-
I ask you to contact your legislators to ask them to SUPPORT HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution.
(To find your elected officials, go here: http://le.utah.gov/GIS/findDistrict.jsp.)

---

UPDATE (2/10):

The Resolution has been assigned to a Committee! It is not yet on an agenda, but will be considered by the House Health & Human Services Standing Committee. If you would like to contact these members and ask them to pass HJR35 out with a favorable recommendation, use this email list:

"Rep. Paul Ray, Chair" pray@utah.gov,
"Rep. Evan J. Vickers, Vice Chair" evickers@utah.gov,
"Rep. Ronda Rudd Menlove" rmenlove@utah.gov,

"Rep. Rebecca Chavez-Houck" rchouck@utah.gov,
"Rep. Tim M Cosgrove" tcosgrove@utah.gov,
"Rep. Bradley M Daw" bdaw@utah.gov,
"Rep. Dean Sanpei" dsanpei@utah.gov,
"Rep. Christine F. Watkins" cwatkins@utah.gov,
"Rep. David Clark" dclark@utah.gov

---

We are still unsure about the cause of death for Dominic and Bridget, but it is believed they died due to an underlying Mitochondrial Disease. It is also thought that this is contributing to the health problems that have resulted in hospitalizations for our other children. The field of mitochondrial science is relatively new, but has evolved quickly. Discovery is happening at a rapid pace, and more understanding about impaired mitochondrial function resulting in Mitochondrial Disease is bringing more testing and treatments.

But the testing is still quite expensive (the latest test we've considered is $15,000 - and NOT covered by health insurance), invasive (the typical recommendation for someone suspected to have a mitochondrial disease is to have a piece of muscle surgically removed from the thigh), and still new enough to be quite inconvenient, with only a handful of labs across the country capable of processing samples and interpreting results. There is yet to be an FDA approved treatment, though there is promising research that may soon lead to this.

Many have never heard of Mitochondrial Disease, but studies are indicating that many diseases we are familiar with - like cancer, diabetes and autism, for example - may actually be attributed to a mitochondrial dysfunction. More research and discovery in mitochondrial science will not only help those with classified Mitochondrial Disease, but has promising hopes of giving us better understanding in other more commonly known health challenges.

We have been working in many ways to increase awareness of the symptoms and affects of Mitochondrial Disease, with hopes this will result in more interest for funding and research to accelerate discovery that will lead to improved testing and treatment. Currently, the Utah Legislature is in session, and has a bill to consider that would designate the first full week in September as Mitochondrial Awareness Week:

http://le.utah.gov/~2011/htmdoc/hbillhtm/hjr035.htm

That is the week which coincides with our efforts to organize an Energy for Life Walkathon, planned to be held on Saturday, September 10, 2011. I hope that you will take time to contact your Representative and Senator and ask them to SUPPORT HJR35: Utah Mitochondrial Disease Awareness Week Joint Resolution. To find your elected officials, go here: http://le.utah.gov/GIS/findDistrict.jsp.



Feel free to forward this information and request to anyone in Utah who would also be willing to contact their elected officials. I hope to have more information coming about the Energy for Life walk, if you'd like to be a part of that. Thank you for your time on this matter that is quite personal to us, even though we are still uncertain. We feel that more research and understanding about Mitochondrial Disease will ultimately make finding the right diagnosis for families like ours less difficult, costly, and frustrating.