Tribute to a great group: Kansas Advocates

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Each day of May for Lyme Awareness Month in 2015, whatislyme.com would like to recognize someone in the Lyme community that has done something to try to help the Lyme community. There are several “unsung heroes” in our community and we would  like to just offer them a little recognition and make sure that their achievements and efforts don’t go  unnoticed.

Today we would like to recognize:

Kansas Advocates

Senator Carol McGinn Sedgwick County

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Senator McGinn has sponsored two resolutions for May as Lyme Awareness Month.

Caleb McGinn

(Musician and Senator’s son)

Caleb’s Song, “Keep Pushin On”  and interview with Cyclist, John Donnally.

Website: http://www.calebmcginn.com/

Lyme Association of Greater Kansas City

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Ila and Kathy

Ila of Lenexa, KS has been President of the Lyme Association of Greater Kansas City since 2007.  She has provided compassionate help to many people with Lyme disease.  She has testified before the Missouri House health committee and made a speech at the Missouri state capitol during a Lyme Awareness month rally a few years ago. She has also participated in a Kansas Lyme Awareness Month event in Lawrence. She has exhibited at many health fairs and medical conferences in Kansas and Missouri, telling the public, nurses, and doctors about the health problems and political problems that Lyme disease patients face. She has nearly 20 years’ experience as a Lyme disease advocate.

Kathy of Overland Park, Kansas has been an active member of the Lyme Association of Greater Kansas City for 16 years.  She has written many articles for their Prime Time Lyme newsletter, updated the association’s Lyme Disease is on the Rise’s brochure, and helped create and distribute education packets for school nurses. She has written a paper, “Tips on Starting a Support Group,” which has been used by people starting groups. She has created literature packets which are given to doctors, nurses, and patients.  She has exhibited at more than 40 medical conferences and over 40 health fairs and community festivals. She has discussed Lyme disease issues with legislators in Missouri and Kansas.

She was a school teacher until a tick bite 17 years ago ended her career. Her focus now is educating patients, the public, medical professionals, and politicians about tick-borne diseases. She wants to get the truth out about Lyme disease so that people can get diagnosed and treated promptly and adequately.

The Lyme Association of Greater Kansas City, Inc. is a 501(c)(3) nonprofit organization whose mission is to serve as a support group for patients and their families, to educate the public about prevention, and to cooperate with the medical community. The organization has been active since it was formed in 1993. It serves people in Missouri and Kansas and many other states.

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WORKING TOGETHER

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Kathy White, Mr. Lambert, Veronica, Melissa, Governor Brownback, Bobby, Sammy, Janna, Peninah

Kansas Tick-Borne Disease Advocates, Inc.

Kansas Tick-Borne Disease Advocates, Inc. (previously called Kansas Lyme Fighters) was formed in 2009 as a501 (c) (3) nonprofit organization serving the State of Kansas. Our mission is Advocacy, Education, Awareness, and Support for people with tick-borne infections. Our vision is that all Kansans will have equal access to the Standard of Care endorsed by www.ILADS.org physicians.

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Tammy, Peninah, Bill, Chrisandrea, (Kay, not pictured)-Founders

 We started fundraising and created the Harvest Carnival in Garnett and the Hope for Healing 5K Race/Walk in Lawrence, and this year in Hays, KS. In the future, we want to create 5K Races/Walks/Wellness Fairs throughout the State of Kansas to increase awareness that tick-borne infections are a problem. We have had 26 cities in Kansas and 7 states represented at our 5K events. The Tick-Borne Disease Alliance (TBDA) helped us tremendously in 2013.

We encourage partnerships with www.Lymetap.com and we raise money to give to individuals and families in Kansas so that they can access medical testing and treatment using the www.ILADS.org Standard of Care. We are in the process of creating a new website with innovative programming to launch by 2016 called www.tickbite.club.  Our current contact information is:  KSTBDA, PO Box 442576, Lawrence, KS 66044, Phone: **TICKBITE or 785-248-3504, www.KansasLyme.org, email is kstbda@gmail.com, and www.facebook.com/kstbda

2015 USATF 5K Race/Walk & Wellness Festival at http://www.kansaslymefighters.webs.com

Tammy has been an advocate since 2005. She founded the chronic fatigue and fibromyalgia support group which is now led by Rachel in Lawrence. Tammy discovered that the source of her CF/FM was Lyme disease and co-infections. She co-founded Kansas Tick-Borne Disease Advocates, Inc. in 2009. Her strength is community. She brings people together. All feel a sense of warmth and comfort, purpose and meaning in her presence. She is truly the heart of our organization.

Peninah was encouraged in 2007 to advocate for others by Leslie Wermers and Tracie. Later, Judy Weeg offered much technical and financial support to get started.  The Lyme Association of Greater Kansas City provided vital technical assistance and encouragement.  Peninah is passionate about people gaining access tomedical care that works. It’s important to get people back to work and back on their feet! Peninah has received ILADS training through conferences and is excited about furthering her knowledge of nursing care for people with infectious diseases.  Most of all, she is a mother of six grown children and five grandchildren.  She understands how difficult it is to be a mother who faces disease on every side, yet must overcome in order for all to become well, no matter the obstacles– never, never, never give up!

Bill is a co-founder and has been a caring, compassionate force among us. He is focused on process and details that most of us would miss without him. He has suffered with Lyme disease since he was a teenager but was diagnosed about 5 years ago. He has great compassion for young people who suffer in completing their high school and college classes and encourages disability accommodations. He is eager to encourage proper diet and exercise and has been known to walk with people to get them moving again. He has great patience and love for all of us in Kansas who suffer from tick-borne infections.

Chrisandrea is a fireball! She is a fundraiser extraordinaire! She is the energy behind our fundraising efforts and loves to build awareness wherever she goes. Christy has suffered greatly and understands how Lyme disease affects the whole family. Her family created the Harvest Carnival in Garnett. Each event was very special! We would see people gathering and asking questions and because of her hard work—many were diagnosed for the first time through her encouragement to seek care from Lyme Literate Medical Doctors.

Kay was the original trustee with Peninah. Her strength is encouragement and taking an idea kayand bringing them to completion. She is an executive business woman who brought technical expertise and served in an advisory capacity overall. Kay’s love for people is enormous. She gave of her time, energy, money to help people to go to the doctor, get medicine, find housing, and receive enough support to maintain their families. Outside of the organization, she and her parents gave financially for the medical care of about 20 people who would not have been able to see a Lyme Literate Medical Doctor. Kay is all about saving lives.

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Hope for Healing USATF 5K RACE/WALK & Wellness Fair

Tana, Nikki (Top Fundraiser for several years!), Donna, Senators Marci Francisco (Lawrence), Carol McGinn (Valley Center), Rachel (Leader of the CF/FM support group in Lawrence), Christy, Peninah with the Governor’s Proclamation of “May as Tick-Borne Disease Awareness Month.” Senator McGinn has sponsored two resolutions in the Senate of the State of Kansas for Lyme disease Awareness.

See Nikki here on Youtube.

GO NIKKI!!!

Thank you Tana and Rhonda for the meal, and awesome advocates Peggy and Ariah, Russell, Jennifer, Tana, Ida, Caite.

 

HOPE FOR HEALING USATF 5K race/walk & Wellness Fair

Sign up Here:

www.kansaslyme.org

Wichita Lyme Disease Support Group

We started the Wichita Lyme Disease Support Group in 2010, during the time my husband was undergoing treatment of Lyme disease.

Our goal was to bring Lyme Disease Awareness to the Wichita and surrounding area, provide fellowship and direction for the patients diagnosed with the disease.

As part of our activities I schedule speakers to talk to our group.  We have group sharing in a setting where no one is judged and where they are understood and comforted.

We meet the third Tuesday of the month at Saint Elizabeth Ann Seton church.  Meet September -May.   June & July not meeting.  August is a social event. Contact: bpreich@att.net

http://www.kansas.com/news/business/health-care/article1030526.html http://www.kake.com/home/headlines/94705444.html http://www.kake.com/findit/tuesdayheadlines/103497434.html

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Pam and Robert (Co-Founders) Wichita Lyme Disease Support Group
Kathy (Co-Chair) of the Wichita Lyme Disease Support Group
Kathy (Co-Chair) of the Wichita Lyme Disease Support Group

brandi momma lyme

Brandi (MommaLyme)

Brandi is the “go too” person for comfort and care. She is a great listener and can take your ideas and help you to accomplish them. She has spoken for Kansans on national level conference calls. She was a technical advisor for the Kansas Lyme Fighter’s Hope for Healing USATF 5K Race and was a top fundraiser. She is a “voice of reason,” for many of us in Kansas who need to be heard by those in power. Her kindness and gentleness stand out, yet she speaks with power and authority.

“Since becoming sick with Lyme disease and co-infections in 2009, I have dedicated my time to helping others navigate through the tough waters of getting a diagnosis and treatment. Awareness, education and advocacy are the key to helping others recognize the dangers of tick-borne illnesses and saving lives. It’s not an easy job, but a very rewarding one. I have partnered with Kansas Tick-borne Disease Advocates, Inc. in their dedication to this cause, and they have also helped me in my own journey. I have lead a support group, helpedwith fundraising, and been a lifeline to people who are suffering and desperate to get better. Lately, I have focused on my own children, who were born with congenital Lyme, and I’m using all my energy to get them well. My goal for the future would be to get adequate healthcare for all Lyme sufferers, paid fully by insurance. And for the medical community to be educated in tick-borne illnesses as much as a Lyme-literate doctor. A dream come true for me, would be a cure for us all… to get back the life we once had, and to be able to save our children from a life of pain and agony. I have hope that this is possible, and until then, we as Lyme warriors, stand united for our cause.” Brandi

Contact info: brandimc@live.com, Facebook: https://www.facebook.com/brandi.mommalyme

Kem

KEM

Kem is working hard in northwestern Kansas to get the word out that ticks do live in her part of the woods (or lack thereof). Small animals, pets, and birds carry ticks to all parts of Kansas!

Here she is—telling her story!

Kem states, “Lyme has been my biggest life game changer.  It has challenged me to become the best I can be.I have learned to enjoy and cherish each and every day.  I have trained myself to see the beauty and joy in the smallest things.  I have had Lyme for decades, diagnosed about 3 ½ years ago, and started engaging in Lyme advocacy shortly after diagnosis.   I have participated in an interview by John Donnally’s bicycle journey acrossthe nation,  co-created a Kansas Lyme Facebook group, had a Lyme disease feature story in the local newspaper, engaged and encouraged many via Facebook chat groups, attempted to get a partnership between LDUC (Lyme disease United Coalition) and our local hospital to treat Lyme disease, and fabricated a quilt square for myself and one in honor of a deceased man that passed from Lyme disease in our area to be sewn in the national Lyme quilt.  Also, I have written Lyme educational letters to clueless mainstream doctors that attempted to treat me and failed with diagnosis and treatment.   I continue to offer myself to the hopeless Lyme victims and have spent time encouraging others via email, private messages, and phone calls.  My goal is to exhaust every ounce of God given energy and compassion to help the Lyme community.  My wish is that every child, woman, and man will someday be exempt from all strains of Lyme and co-infections.”

Jalue

Jalue

“I have had Lyme disease, babesia, mycotoxin illness, and chronic fatigue for 8 years. I have come a long way on this journey, still improving as I go.  I love to connect with other Lyme patients and share the challenges we all have and information we all need.  It is so important for people to be informed about this disease and helpedalong the way. Jaluesmith@gmail.com”Jalue is actively helping people with tick-borne diseases in western Kansas.” ~Jalue

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Laura

Laura (Beaux Reliosis) has been a “Lymiee for 20 years, activist 1 year.” She is an incredibly perceptive and hardworking executive that has taken an interest in the cause of people suffering from tick-borne infections. She diligently educates others by explaining high level medical journal articles so that the average person can understand it.

“I work to educate others on the criminal aspects of Lyme disease and the true disease mechanism, which is a tick-acquired immunosuppression. My goal is for the USDOJ to prosecute for the falsification of the Lyme disease case definition, so real, valid and effective treatment options and insurance coverage can become available to all who suffer.”  ~Laura

Email jade.doe@gmx.com    Websites: www.ohioactionlyme.org and http://badlymeattitude.com/

Coming Events

HOPE FOR HEALING USATF 5K RACE/WALK & Wellness Fair

July 11, 2015 at 8 am
CrossPoint
1300 Harvest Road
Hays, Kansas 67601

USATF sanctioned 5K race/walk. Chip timed, flat, out/back. Prizes for every 5 year age group, Masters (not age graded), Overall winners.

Wellness Fair 730 am to 10 am indoors, air conditioned, onsite. Free samples, kids fun!

Online registration and FREE Fundraising pages at http://www.KansasLymeFighters.webs.com

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