This Lyme letter-writing campaign was started as a…

This letter-writing campaign was started as a means of spreading awareness about the plight of Lyme patients and the appalling inequality they must deal with when it comes to receiving diagnosis and treatment. There is a great disparity within the medical and science communities that has had dire consequences for those infected with tick-borne illnesses, in particular Lyme Disease. Patients struggle for years in many cases just to get a diagnosis. Misdiagnosis after misdiagnosis is thrown at them, none sticking any better than the other, leaving these unfortunate many to suffer and continue to go untreated and in some causes- die. Due to outdated and inaccurate guidelines a number of patients must pay for treatment out-of-pocket, leading some to empty their life-savings, kid’s college funds and retirement nest-eggs. All because of the ignorance of others, too set in their ways to open their eyes. It is not only us that must struggle and fight to achieve equality either. Our doctors also face persecution and risk losing their careers simply by treating us the best way they see fit. So what exactly is it that we want to do? Well, we want to take back our voices and show those in power that we are not willing to sit by and watch as our rights are spit upon. On January 3rd, 2011 we want to show just how strong we are and that we are not suffering from an "easy to diagnose and simple to cure" disease. We must be the voice for those too sick to take a stand! Carrying their stories across America in an effort to make a difference! We want to deluge the offices of the Infectious Diseases Society of America, the Centers for Disease Control and Prevention, the Food and Drug Administration and the National Institutes for Health with lime green envelopes announcing our solidarity. Proudly stating "We are One!". Showing those who discriminate against us and those who aide them we are not going to keep silent. We must contact any and all who will listen! From the President of the United States right down to our local representatives. Newspapers and the morning news. Magazines and talk shows. We must spread the word and let awareness sing from sea to shining sea. This is not simply an issue of having a tick-borne illness either, our families suffer just as we do, both from seeing what we go through everyday and from the pressures Lyme Disease puts on relationships. This is their chance to voice their stories. Our campaign is also open to those merely support our cause as well, allies on the battlefield. In the end however, it is likely you know someone with Lyme Disease, even if you don’t think you do. We are set to take the world by storm this January 3rd. Stand ready and prepare to speak your mind. Take a moment to help lead us towards equal patient rights. View Post on Facebook · Edit Email Settings · Reply to this email to add a comment.

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Jordan Jemsek…

From the album: Wall Photos

By Lyme Friends

PLEASE HELP THIS DYING SIX YEAR OLD GIRL BY REGISTERING FOR THE BONE MARROW REGISTRY…Her father is one of the TOP Lyme doctors in the US. I have been on the Registry since I was in my 20’s but I am no longer eligible because of Chronic Lyme Disease. It’s easy, just follow the directions at the bottom. They do not have a donor mat…ch for her. Please help!

November 29, 2010
Dear patients, friends, and family, My wife Kay and I are writing to you today to make a somber request on behalf of our six year old daughter, Jordan. As most of you may already know, last September 2009 Jordan was diagnosed with acute myelogenous leukemia (AML). She received outstanding care during several rounds of extended chemotherapy while hospitalized for 6 ½ months at PresbyterianHospital in Charlotte at the Hemby Cancer center.

When Jordan was declared in remission we were finally able to bring her home on Easter day this Spring. After several joyful months at home with Jordan, this past week we were devastated to learn that Jordan has relapsed. In the upcoming weeks, she will begin receiving chemotherapy in preparation for a bone marrow transplant that she will have later this winter.

Last year, after much research aided by the excellent support of the Hemby physicians in Charlotte and the Pediatric Oncology Department at Children’s Hospital in Washington, DC, we were already exploring the option for Jordan to have a bone marrow transplant in the event that the chemotherapy was ineffective. Unfortunately, neither members of her family, nor those in the national donor registry provided a satisfactory match. Unfortunately, at this time we are left without another option and must proceed with a bone marrow transplant for Jordan to survive.

We anticipate that the transplant will occur in March/April 2011 at Children’s Hospital in DC after Jordan undergoes an estimated 3 months of induction chemotherapy at the HembyCenter; she is on her way to the hospital with us today. In order to increase the likelihood that we find a better match for Jordan, we are asking friends and family to participate in joining the National Marrow Donor Program. Because patients are most likely to match someone of their own race or ethnicity, please be aware that Jordan comes from a Scottish, Irish, and Ukrainian background. We have outlined the simple steps below in how one can get signed up to be part of this registry.

For all of our patients and others suffering from Lyme Borreliosis Complex, the highly disturbing irony is that the National Marrow Donor Program (NMDP) does recognize chronic Lyme disease while the general community does not. As part of the NMDP medical guidelines, patients with ‘chronic Lyme disease ‘ may not register (details on the linked site below). However, we would humbly request that those individuals struggling with Lyme Borreliosis encourage other family members and friends to consider joining the registry.

We greatly appreciate all of the prayers and overwhelming support that our family has received, and we ask for you all to continue to pray as we continue on our journey towards Jordan’s recovery from this devastating disease. If you have questions, please contact Elizabeth Ballas at eballas@jemsekspecialty.com. As before, regular updates will be posted to www.caringbridge.org under keyword jordanjemsek.

God Bless, Dr. and Mrs. Joseph G. Jemsek

From the National Marrow Donor Program website:
In order to get signed up in the Be the Match Registry, please follow these easy steps.
1. To get signed up now, you can register online and have a test kit sent to your home!·
Go to this website and follow the instructions: http://www.marrow.org/JOIN/Join_Now/join_now.html•Confirm you meet basic registry guidelines. (Must be between the ages of 18 and 60.
Please pay special attention to the medical guidelines)

•Complete the online form and order your registration kit, which should arrive in 7-10 days. It is free to join and get tested, but please also consider making a financial contribution.
•Follow your instructions in your kit to collect a swab of cheek cells and return the kit in the mail.
2. If you’d like to get tested in person, please use the following link to locate a nearby donor drive or recruitment center. · http://www.marrow.org/JOIN/Join_in_Person/index.html

For more information, please visit:

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PLEASE HELP! Urgent plea from Dr. Jemsek for bone marrow for his young daughter

Dr J’s 6 year old daughter Jordan, who was in remission since last winter from a nasty type of leukemia, has relapsed (her mom, Kay, his wife, had breast cancer at the same time…unbelievable!) We can NOT donate bone marrow if we have Lyme but our other loves ones can. She needs this to survive. et an email going & save this baby’s life! Dr J is the one who saved my life w multiple IV meds, 2x/ day, pulsed (MWF). I had a brain stem infection & no other docs figured it out. Getting better slowly but surely, sometimes 2 steps fwd & 1 back, but 4th PICC line allowed me to do so. He’s been thru so much, w/ the IDSA "siccing" state med boards on him, causing him to have to move his practice twice &bankrupting him but he knows he’s saving lives so he keeps going! PLEASE read the below & consider becoming a bone marrow donor. None of her family is a match. You know a lot of people would do this for you! And please pass this along to your family & friends. Some where there has to be a donor match for this little princess. Thank you, –Karen

personal message from Dr. and Mrs. Jemsek regarding our daughter Jordan

November 29, 2010
Dear patients, friends, and family,
My wife Kay and I are writing to you today to make a somber request on behalf of our six year old daughter, Jordan. As most of you may already know, last September 2009 Jordan was diagnosed with acute myelogenous leukemia (AML). She received outstanding care during several rounds of extended chemotherapy while hospitalized for 6 ½ months at PresbyterianHospital in Charlotte at the Hemby Cancer center. When Jordan was declared in remission we were finally able to bring her home on Easter day this Spring. After several joyful months at home with Jordan, this past week we were devastated to learn that Jordan has relapsed. In the upcoming weeks, she will begin receiving chemotherapy in preparation for a bone marrow transplant that she will have later this winter.
Last year, after much research aided by the excellent support of the Hemby physicians in Charlotte and the Pediatric Oncology Department at Children’s Hospital in Washington, DC, we were already exploring the option for Jordan to have a bone marrow transplant in the event that the chemotherapy was ineffective. Unfortunately, neither members of her family, nor those in the national donor registry provided a satisfactory match. Unfortunately, at this time we are left without another option and must proceed with a bone marrow transplant for Jordan to survive. We anticipate that the transplant will occur in March/April 2011 at Children’s Hospital in DC after Jordan undergoes an estimated 3 months of induction chemotherapy at the HembyCenter; she is on her way to the hospital with us today. In order to increase the likelihood that we find a better match for Jordan, we are asking friends and family to participate in joining the National Marrow Donor Program. Because patients are most likely to match someone of their own race or ethnicity, please be aware that Jordan comes from a Scottish, Irish, and Ukrainian background. We have outlined the simple steps below in how one can get signed up to be part of this registry.
For all of our patients and others suffering from Lyme Borreliosis Complex, the highly disturbing irony is that the National Marrow Donor Program (NMDP) does recognize chronic Lyme disease while the general community does not. As part of the NMDP medical guidelines, patients with `chronic Lyme disease ` may not register (details on the linked site below). However, we would humbly request that those individuals struggling with Lyme Borreliosis encourage other family members and friends to consider joining the registry.
As for those of you wanting to be tested specifically as a match for Jordan, i.e. a designated donation, due to the complicated process and cost of being tested privately, we instead recommend and request that you enter the general registry. We greatly appreciate all of the prayers and overwhelming support that our family has received, and we ask for you all to continue to pray as we continue on our journey towards Jordan’s recovery from this devastating disease. If you have questions, please contact Elizabeth Ballas at eballas. As before, regular updates will be posted to http://www.caringbridge.org under keyword jordanjemsek.
God Bless,
Dr. and Mrs. Joseph G. Jemsek

From the National Marrow Donor Program website:

In order to get signed up in the Be the Match Registry, please follow these easy steps.

1. To get signed up now, you can register online and have a test kit sent to your home!
· Go to this website and follow the instructions: http://www.marrow.org/JOIN/Join_Now/join_now.html

o Confirm you meet basic registry guidelines. (Must be between the ages of 18 and 60. Please pay special attention to the medical guidelines)

o Complete the online form and order your registration kit, which should arrive in 7-10 days. It is free to join and get tested, but please also consider making a financial contribution.

o Follow your instructions in your kit to collect a swab of cheek cells and return the kit in the mail.

2. If you’d like to get tested in person, please use the following link to locate a nearby donor drive or recruitment center.
· http://www.marrow.org/JOIN/Join_in_Person/index.html

For more information, please visit: http://www.marrow.org.

__,_._,___

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God’s paintbrush…Fall at Butchart Gardens

FALL AT BUTCHART GARDENS , VICTORIA , B. C., CANADA

IT’S HARD TO BELIEVE ANYTHING COULD BE THIS BEAUTIFUL…

TALK ABOUT THE LORD’S PAINTBRUSH?-? HERE IT IS!

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So worthy of a forward….

"<http://www.incredimail.com/?id=606430&amp;rui=107260094&amp;sd=20101105>

Kuper Productions Ltd.

301 Forest Hill Road

Toronto, ONM5P 2N7

t-416-782-4553

f-416-782-4425

kuperjack

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Nativity Scene

He can come live with me!!! I miss my shepherd……every minute, every day… This is adorable & you will love it…

A Nativity Scene was erected in a church yard. During the night the folks came across this scene. An abandoned dog was looking for a comfortable, protected place to sleep. He chose baby Jesus as his comfort. No one had the heart to send him away so he was there all night. We should all have the good sense of this dog and curl up in Jesus’ lap from time to time. This is too sweet not to share. No one mentioned that the dog breed is a "shepherd!"

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Faces of Lyme (yes we are in it, close to the end…)

Loudoun Co. has 20x the rate of infection of any other County on Va (across the river from Ft Dietrich?)

Lyme is in all 50 states and has been found in just about every country. There are several co-infections, all of which, including Lyme, can be fatal.

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Immortals

Kelley’s 2nd band at their first performance…youtube

http://www.facebook.com/profile.php?id=592035070&ref=hpbday&pub=2386512837#!/karen.e.hausfeld?ref=profile

This is for those of you who have NOT had a chance to see Kelley sing/play guitar (which she had to give up over 2 years ago due to her health)…or if you’d just like to see her again! This is the very FIRST performance of the Immortals (who still perform) & was posted to youtube. Sound gets a little distorted in some places, & at first the sound on her mic wasn’t turned up enough but….I still love it. She was 14 or 15 here.

Some of you have seen it before – or saw them live, but I had a request for it & can’t remember from whom! J Yes….this is the caboose…she turns 19 in 2 weeks…..they’re all grown up!

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