Help Ticking Lyme Moms
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Hello, let us introduce ourselves. Jennifer Kravis, a lawyer, and Sue Faber, a nurse. We both have chronic Lyme disease. We have both been sidelined from our professions due to severe illness and disability. And we both have children with chronic Lyme disease, with suspected infection of our children occurring during pregnancy. We have attached a video of Jennifer's Lyme story - the one she shared at the Canadian Conference on Lyme Disease in Ottawa in May 2016.
We both have become "accidental activists". We are fighting on behalf of our families, and ALL Canadian families who are already infected with Lyme & Co-Infections, and those who are at RISK of being infected. We have an important mission which we have been working on for the last few months, funding all our advocacy out of our own pockets. We are now asking for financial help so we can continue the amazing momentum we have created, and truly make an impact.
Thank you in advance for your help and support. We are seeking $25,000 which will fund the efforts described below. As we are simply two individuals, we do not have the ability to issue tax receipts. Funds will be spent on:
- promoting the Ticking Lyme Bomb Petition including buying ad space on social media
- promoting and executing the Lyme Letters Campaign described on www.lymehope.ca including printing, copying, publishing and courier costs
- helping us with our expenses related to our trips to Ottawa
- if we are able to secure high profile people such as medical professionals and/or scientists to come to Ottawa with us, we will need money to cover their time and expenses
- we are trying to get funds to hire a professional PR person to help us pull together a media strategy
- continued Lyme advocacy work in Canada including education of the public and medical professionals, media, public service announcements, education materials, videos and/or demonstrations / events etc.
In January of this year, Sue Faber put a call out for personal letters to federal Health Minister Jane Philpott from Canadians affected by Lyme Disease via www.lymehope.ca. And she has over 2,200 letters addressed to Minister Philpott. Heartbreaking, gut wrenching, sickening letters. From men, women and children across this great Country, telling the SAME sad and unacceptable story. These letters haunt us.
Sue made a promise to hand deliver these letters to Minister Philpott personally.
Then our federal Government released a draft "Action Plan" for Lyme Disease on February 7, 2017, the result of years of advocacy and the work of MP Elizabeth May and Bill 442 which laid out the process for this Action Plan. The draft that was released by Public Health Agency of Canada is actually a "non-action plan" and is totally unacceptable. In response to this, Sue and I started our petition on change/org - our Ticking Lyme Bomb Petition:
http://bit.ly/2lfBuNL
And it's now at almost 42,000 signatures, and over 11,000 heartbreaking, shocking and disturbing comments from every Province and Territory. Directed to Minister Philpott. If you haven't already done so, PLEASE sign, comment and share this Petition as widely as you can across Canada.
To date, despite our numerous attempts and requests to secure a meeting with Minister Philpott, she has NOT agreed to accept these letters or grant us a meeting. Minister Philpott is NOT responding to letters sent directly to her. She is forwarding letters to her to Public Health and they are responding with FORM letters on her behalf.
We do not feel this is acceptable. It is not enough for us to simply drop these letters on her doorstep to go into the "black hole" and for these Canadians to receive form letters back from someone other than Minister Philpott, to whom these calls and pleas are specifically directed.
Time is running out, the final Government Framework on Lyme Disease will be published in May 2017. Our advocates, who were promised a seat at the table, have been SHUT out of this process.
UPDATES July 23, 2017:
Update #1: The final Framework was released in May and has NOT addressed the major issues outlined in the Petition. It contains nothing to assist people with Lyme disease or to address the lack of treatment. It contains nothing to address the enormous out of pocket expenses Canadians are having to incur to travel outside the Country for medical care. It contains nothing to address those suffering and debilitated at home if they cannot afford expensive care outside Canada.
Update #2: The Government has allocated only $4 million towards Lyme (over 5 years!) which is a slap in the face and totally inadequate. By comparison, the Government has allocated $100 million towards eradicating polio.
Update #3: As a result of our meetings and the engagement of thousands of Canadians, the House of Commons Standing Committee on Health conducted a study into the final Lyme Framework. Our testimony can be found here: https://www.youtube.com/watch?v=9wLAgudDsjY and here: https://www.youtube.com/watch?v=-gByuqmZBNk
The full transcripts and briefs can be found here: https://www.ourcommons.ca/Committees/en/HESA/StudyActivity?studyActivityId=9527827
The Committee has prepared a letter to Minister Philpott. We do not yet know what recommendations were made to the Minister.
Update #4: Sue Faber and I (Jennifer Kravis) have a meeting with Minister Philpott!! It only took us 3 trips to Ottawa, many meetings with MPs and Senators, a few media interviews, plugging a petition that now has 41,289 signatures and almost 11,000 comments, reading hundreds of personal Lyme letters and thousands of Petition comments, and and 6 months of Sue calling and writing Minister Philpott's office requesting a face to face meeting with her to speak to and deliver the letters... to finally be invited to meet Minister Philpott in September!
This would not have happened without the support of thousands of Lyme sufferers and concerned Canadians who signed, wrote, emailed, cheered us on, and posted comment after comment on Minister Philpott's Facebook page!
We need even more signatures on this Petition, please share:
http://bit.ly/2lfBuNL
#tickinglymebomb
And finally, if you haven't already, please send in your personal story about how Lyme has affected your life or the life of someone you know or simply to state your concerns about the management of Lyme in Canada - to [email redacted]. com before September 1. Please also let us know if we have your permission to keep a copy of your letter for the purposes of sharing with the media.
Update #5: Sue Faber and I are headed back to Ottawa in September to meet Minister Philpott to deliver the Lyme Letters and to speak on behalf of thousands of Canadians.
Update #6: We have spent $14,000 to date on:
- 3 flights for Sue and I to Ottawa; 1 flight for the Doctor who joined us in Ottawa and our meetings
- binders, memory sticks, business cards, copying and printing and binding numerous copies of the 10,000 petition comments and thousands of Lyme Letters
- hotels, taxis, partial modest reimbursement for meals
- $900 to a professional photo journalist to spend 2 days with us in Ottawa documenting our meetings and updating social media
- $5,600 to a professional PR firm to assist with media, preparing and issuing press releases and a lobbyist to spend 2 days with ous in Ottawa
- boosting Facebook posts
So... Sue and I are GOING TO OTTAWA for the 4th Time.
We have no other choice. 41,000 Canadians have spoken out strongly. People are VERY concerned, as they should be.
We both struggle with serious health effects from Lyme Disease. We have sick children at home. We have busy lives and families to care for. But we are totally committed to continuing this fight.
We know we have the hearts and support of TENS of THOUSANDs of Canadians, and even more who haven't heard of us yet, but are sick at home with a "mystery" illness they just don't realize yet, is LYME DISEASE.
Because this is ridiculous. And WRONG. Canadians are literally begging to be heard, writing pages and pages of the saddest stories of neglect, abuse, denial and mistreatment. Children are hurting, and are being shockingly mistreated and UNTREATED. And this is putting MORE and MORE Canadians at risk as the threat of Lyme Disease and the expansion of ticks just grows and grows.
This truly is a "Ticking Lyme Bomb", putting ALL Canadians at risk every time you step outside. Everyone is only ONE bite away from a life altering illness.
Please follow our journey via Twitter @tickinglyme, on Facebook at https://www.facebook.com/lymehopecanada/ and at www.lymehope.ca
Wish us luck with our continued advocacy! Thank you,
Jennifer Kravis & Sue Faber
Ticking Lyme Moms
#tickinglymebomb
#LymeHope
We both have become "accidental activists". We are fighting on behalf of our families, and ALL Canadian families who are already infected with Lyme & Co-Infections, and those who are at RISK of being infected. We have an important mission which we have been working on for the last few months, funding all our advocacy out of our own pockets. We are now asking for financial help so we can continue the amazing momentum we have created, and truly make an impact.
Thank you in advance for your help and support. We are seeking $25,000 which will fund the efforts described below. As we are simply two individuals, we do not have the ability to issue tax receipts. Funds will be spent on:
- promoting the Ticking Lyme Bomb Petition including buying ad space on social media
- promoting and executing the Lyme Letters Campaign described on www.lymehope.ca including printing, copying, publishing and courier costs
- helping us with our expenses related to our trips to Ottawa
- if we are able to secure high profile people such as medical professionals and/or scientists to come to Ottawa with us, we will need money to cover their time and expenses
- we are trying to get funds to hire a professional PR person to help us pull together a media strategy
- continued Lyme advocacy work in Canada including education of the public and medical professionals, media, public service announcements, education materials, videos and/or demonstrations / events etc.
In January of this year, Sue Faber put a call out for personal letters to federal Health Minister Jane Philpott from Canadians affected by Lyme Disease via www.lymehope.ca. And she has over 2,200 letters addressed to Minister Philpott. Heartbreaking, gut wrenching, sickening letters. From men, women and children across this great Country, telling the SAME sad and unacceptable story. These letters haunt us.
Sue made a promise to hand deliver these letters to Minister Philpott personally.
Then our federal Government released a draft "Action Plan" for Lyme Disease on February 7, 2017, the result of years of advocacy and the work of MP Elizabeth May and Bill 442 which laid out the process for this Action Plan. The draft that was released by Public Health Agency of Canada is actually a "non-action plan" and is totally unacceptable. In response to this, Sue and I started our petition on change/org - our Ticking Lyme Bomb Petition:
http://bit.ly/2lfBuNL
And it's now at almost 42,000 signatures, and over 11,000 heartbreaking, shocking and disturbing comments from every Province and Territory. Directed to Minister Philpott. If you haven't already done so, PLEASE sign, comment and share this Petition as widely as you can across Canada.
To date, despite our numerous attempts and requests to secure a meeting with Minister Philpott, she has NOT agreed to accept these letters or grant us a meeting. Minister Philpott is NOT responding to letters sent directly to her. She is forwarding letters to her to Public Health and they are responding with FORM letters on her behalf.
We do not feel this is acceptable. It is not enough for us to simply drop these letters on her doorstep to go into the "black hole" and for these Canadians to receive form letters back from someone other than Minister Philpott, to whom these calls and pleas are specifically directed.
Time is running out, the final Government Framework on Lyme Disease will be published in May 2017. Our advocates, who were promised a seat at the table, have been SHUT out of this process.
UPDATES July 23, 2017:
Update #1: The final Framework was released in May and has NOT addressed the major issues outlined in the Petition. It contains nothing to assist people with Lyme disease or to address the lack of treatment. It contains nothing to address the enormous out of pocket expenses Canadians are having to incur to travel outside the Country for medical care. It contains nothing to address those suffering and debilitated at home if they cannot afford expensive care outside Canada.
Update #2: The Government has allocated only $4 million towards Lyme (over 5 years!) which is a slap in the face and totally inadequate. By comparison, the Government has allocated $100 million towards eradicating polio.
Update #3: As a result of our meetings and the engagement of thousands of Canadians, the House of Commons Standing Committee on Health conducted a study into the final Lyme Framework. Our testimony can be found here: https://www.youtube.com/watch?v=9wLAgudDsjY and here: https://www.youtube.com/watch?v=-gByuqmZBNk
The full transcripts and briefs can be found here: https://www.ourcommons.ca/Committees/en/HESA/StudyActivity?studyActivityId=9527827
The Committee has prepared a letter to Minister Philpott. We do not yet know what recommendations were made to the Minister.
Update #4: Sue Faber and I (Jennifer Kravis) have a meeting with Minister Philpott!! It only took us 3 trips to Ottawa, many meetings with MPs and Senators, a few media interviews, plugging a petition that now has 41,289 signatures and almost 11,000 comments, reading hundreds of personal Lyme letters and thousands of Petition comments, and and 6 months of Sue calling and writing Minister Philpott's office requesting a face to face meeting with her to speak to and deliver the letters... to finally be invited to meet Minister Philpott in September!
This would not have happened without the support of thousands of Lyme sufferers and concerned Canadians who signed, wrote, emailed, cheered us on, and posted comment after comment on Minister Philpott's Facebook page!
We need even more signatures on this Petition, please share:
http://bit.ly/2lfBuNL
#tickinglymebomb
And finally, if you haven't already, please send in your personal story about how Lyme has affected your life or the life of someone you know or simply to state your concerns about the management of Lyme in Canada - to [email redacted]. com before September 1. Please also let us know if we have your permission to keep a copy of your letter for the purposes of sharing with the media.
Update #5: Sue Faber and I are headed back to Ottawa in September to meet Minister Philpott to deliver the Lyme Letters and to speak on behalf of thousands of Canadians.
Update #6: We have spent $14,000 to date on:
- 3 flights for Sue and I to Ottawa; 1 flight for the Doctor who joined us in Ottawa and our meetings
- binders, memory sticks, business cards, copying and printing and binding numerous copies of the 10,000 petition comments and thousands of Lyme Letters
- hotels, taxis, partial modest reimbursement for meals
- $900 to a professional photo journalist to spend 2 days with us in Ottawa documenting our meetings and updating social media
- $5,600 to a professional PR firm to assist with media, preparing and issuing press releases and a lobbyist to spend 2 days with ous in Ottawa
- boosting Facebook posts
So... Sue and I are GOING TO OTTAWA for the 4th Time.
We have no other choice. 41,000 Canadians have spoken out strongly. People are VERY concerned, as they should be.
We both struggle with serious health effects from Lyme Disease. We have sick children at home. We have busy lives and families to care for. But we are totally committed to continuing this fight.
We know we have the hearts and support of TENS of THOUSANDs of Canadians, and even more who haven't heard of us yet, but are sick at home with a "mystery" illness they just don't realize yet, is LYME DISEASE.
Because this is ridiculous. And WRONG. Canadians are literally begging to be heard, writing pages and pages of the saddest stories of neglect, abuse, denial and mistreatment. Children are hurting, and are being shockingly mistreated and UNTREATED. And this is putting MORE and MORE Canadians at risk as the threat of Lyme Disease and the expansion of ticks just grows and grows.
This truly is a "Ticking Lyme Bomb", putting ALL Canadians at risk every time you step outside. Everyone is only ONE bite away from a life altering illness.
Please follow our journey via Twitter @tickinglyme, on Facebook at https://www.facebook.com/lymehopecanada/ and at www.lymehope.ca
Wish us luck with our continued advocacy! Thank you,
Jennifer Kravis & Sue Faber
Ticking Lyme Moms
#tickinglymebomb
#LymeHope
Organizer
Jennifer Diana Kravis
Organizer
Oakville, ON