2022 LMF Weekend Recap and Horseshoe Set Purchase Info:
2022 LMF was another tremendous success.
Thank you to all the donors and participants.
We are on our way to raising over $50,000 between the two events.
Mother Nature had her say during the (unlucky) 13th annual double ringer tournament.
We really appreciate all 64 teams showing up and playing through the rain.
We had fantastic tournament with an exciting final won with a ringer!!!
Some housekeeping notes and a thank you…..
Many of you have expressed interest in purchasing a set of rubber horseshoes.
The horseshoes this year were custom-made for our event through the generous efforts of our brother, Ed Monahan.
Due to the fact that we were unable to obtain our original horseshoes through the vendor (aka Amazon/Cannon Sports), Ed had a horseshoe mold created.
We truly appreciate the time, effort, and resources used over the winter to get this accomplished and now our horseshoe tournament can continue for years to come. Thanks Ed!
We have sets for sale at cost. A set of 4 horseshoes and 2 stakes is $120
So please let us know if you would like to purchase a set.
Lastly in CDKL5 news, as Robert mentioned, the FDA approved the FIRST drug specifically for CDKL5 Deficiency Disorder this year!!!
This incredible achievement was made possible through research dollars and hard work by many, including the IFCR (International Foundation for CDKL5 Research), the recipient of many of our donations.
Lauren participated in the clinical trial to help get the drug safely approved!
WE as a group are making a difference!!
Thanks and enjoy the rest of your summer
Kate, Robert, Mary and Lauren
2022 LMF was another tremendous success.
Thank you to all the donors and participants.
We are on our way to raising over $50,000 between the two events.
Mother Nature had her say during the (unlucky) 13th annual double ringer tournament.
We really appreciate all 64 teams showing up and playing through the rain.
We had fantastic tournament with an exciting final won with a ringer!!!
Some housekeeping notes and a thank you…..
Many of you have expressed interest in purchasing a set of rubber horseshoes.
The horseshoes this year were custom-made for our event through the generous efforts of our brother, Ed Monahan.
Due to the fact that we were unable to obtain our original horseshoes through the vendor (aka Amazon/Cannon Sports), Ed had a horseshoe mold created.
We truly appreciate the time, effort, and resources used over the winter to get this accomplished and now our horseshoe tournament can continue for years to come. Thanks Ed!
We have sets for sale at cost. A set of 4 horseshoes and 2 stakes is $120
So please let us know if you would like to purchase a set.
Lastly in CDKL5 news, as Robert mentioned, the FDA approved the FIRST drug specifically for CDKL5 Deficiency Disorder this year!!!
This incredible achievement was made possible through research dollars and hard work by many, including the IFCR (International Foundation for CDKL5 Research), the recipient of many of our donations.
Lauren participated in the clinical trial to help get the drug safely approved!
WE as a group are making a difference!!
Thanks and enjoy the rest of your summer
Kate, Robert, Mary and Lauren
Join us for the
13th Annual
Lauren Mary Francis Weekend
Friday, July 8th 2022 at 6:00 PM
Whitebrier Restaurant
260 20th Street Avalon, NJ
An open bar and Hors D'Oeuvres
Reception 6:00 to 9:00
$150 Cocktail Reception
Double Ringer Horseshoe Tournament
Saturday, July 9th 2022 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$50 per contestant
Kids Horseshoe Tournament at 10:30 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation, 526 Kimball Turn Westfield, NJ 07090
Credit Card donations can be made at laurenmaryfrancisfoundation.org
Venmo: @Lauren-Gorelick 908 347-2003
*******************There will not be a Golf Tournament********************
13th Annual
Lauren Mary Francis Weekend
Friday, July 8th 2022 at 6:00 PM
Whitebrier Restaurant
260 20th Street Avalon, NJ
An open bar and Hors D'Oeuvres
Reception 6:00 to 9:00
$150 Cocktail Reception
Double Ringer Horseshoe Tournament
Saturday, July 9th 2022 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$50 per contestant
Kids Horseshoe Tournament at 10:30 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation, 526 Kimball Turn Westfield, NJ 07090
Credit Card donations can be made at laurenmaryfrancisfoundation.org
Venmo: @Lauren-Gorelick 908 347-2003
*******************There will not be a Golf Tournament********************
December 23, 2021
As the year draws to a close, we would like to thank all of you for your support.
We were extremely grateful to be able to host our event this past year with cocktails at the Whitebrier and horseshoes on the beach.
While having fun, we raised over $55,000 with our Avalon family in July.
Our 2021 LMF gift to the International Foundation for CDKL5 Research (IFCR) is $65,000.
We feel truly blessed to make this donation through your generosity and support.
This money will aid research for treatment and ultimately a cure for CDD and will help many children like Lauren and that makes our hearts full!
We wish you and your loved ones a very Merry Christmas and Healthy Happy New Year!
All the best in 2022
Robert, Kate, Mary and Lauren
*Tax deductible receipts will be emailed in January.
*Please mark your calendars for next year’s LMF weekend: July 8th and 9th, 2022.
*Lauren enjoying her special weekend!
As the year draws to a close, we would like to thank all of you for your support.
We were extremely grateful to be able to host our event this past year with cocktails at the Whitebrier and horseshoes on the beach.
While having fun, we raised over $55,000 with our Avalon family in July.
Our 2021 LMF gift to the International Foundation for CDKL5 Research (IFCR) is $65,000.
We feel truly blessed to make this donation through your generosity and support.
This money will aid research for treatment and ultimately a cure for CDD and will help many children like Lauren and that makes our hearts full!
We wish you and your loved ones a very Merry Christmas and Healthy Happy New Year!
All the best in 2022
Robert, Kate, Mary and Lauren
*Tax deductible receipts will be emailed in January.
*Please mark your calendars for next year’s LMF weekend: July 8th and 9th, 2022.
*Lauren enjoying her special weekend!
Join us for the
12th Annual Lauren Mary Francis Weekend
Friday, July 9th 2021 at 6:00 PM
Whitebrier Restaurant
260 20th Street Avalon, NJ
An open bar and Hors D'Oeuvres
Reception 6:00 to 9:00
$150 Cocktail Reception
Double Ringer Horseshoe Tournament
Saturday, July 10th 2021 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$50 per contestant
Kids Horseshoe Tournament at 10:30 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation, 526 Kimball Turn Westfield, NJ 07090
Credit Card donations can be made at laurenmaryfrancisfoundation.org
*****There will not be a Golf Tournament*****
However, if you are in town on Friday and wish to play golf, please reach out to Robert directly @ 908 347-2003
July 8, 2020
Good news/Bad news…..
Good news: Today is Lauren’s 17th birthday!
Bad news: We must announce that we are NOT going to host our annual horseshoe tournament this year. We are disappointed that we will not be together on August 1st, however the health of our family and friends is too important to us. We know you would all show up in great numbers to support us and we just do not want to risk exposing anyone to the virus. Kyle and Sean shall remain Champs for another year!
We hope you and your families are safe and healthy. We look forward to seeing everyone soon and we look forward to LMF 2021. Save the date July 9th and 10th.
Thanks for your continued support - Kate, Robert, Mary and Lauren
June 1, 2020
Hello Friends and Family,
Since Memorial Day has past and the weather is starting to feel more like summer, we wanted to send out an update for our Annual LMF Weekend. Due to the uncertainty of the current situation with the COVID 19 pandemic, we have decided to cancel the Friday Night Golf and Reception portion of our weekend. However we would like to host the Double Ringer Horseshoe Tournament and have decided to move the date to Saturday, August 1. We hope by that point of the summer the governor will have increased the number of people for outdoor gatherings. We will send another update July 1st.
We hope you and your families and safe and healthy. We look forward to seeing everyone soon.
Thanks for your continued support - Kate, Robert, Mary and Lauren
Hello Friends and Family,
Since Memorial Day has past and the weather is starting to feel more like summer, we wanted to send out an update for our Annual LMF Weekend. Due to the uncertainty of the current situation with the COVID 19 pandemic, we have decided to cancel the Friday Night Golf and Reception portion of our weekend. However we would like to host the Double Ringer Horseshoe Tournament and have decided to move the date to Saturday, August 1. We hope by that point of the summer the governor will have increased the number of people for outdoor gatherings. We will send another update July 1st.
We hope you and your families and safe and healthy. We look forward to seeing everyone soon.
Thanks for your continued support - Kate, Robert, Mary and Lauren
November 26, 2019
THANKS to all of you, our LMF weekend fundraiser total for 2019 is once again the highest year-to-date!!!
We raised over $45,000 in 2 days for foundations and institutions that are working to find a cure and better treatment options for CDKL5 Deficiency Disorder (CDD). Almost $10,000 more than last year.
This year we will donate $50,000 to support the IFCR and well as the ODC at the University of Pennsylvania. Our donation last year to the IFCR has helped to make the brand new Center of Excellence at CHOP a reality. The past 4 or 5 years in the CDD world have met expectations along the lines of clinical trials and research initiatives. The next 5 may be life changing for our community. We are grateful for your continued support, prayers and love. Together we are making a difference.
This is an exciting time for the CDD community. Robert, Lauren and I participated a conference sponsored by the International Foundation for CDKL5 Research (IFCR), in Washington DC. We spent a long day on Capitol Hill meeting with members of congress and their staffers to educate them on the needs of the CDD community. We also had the honor to contribute to a Patient Forum Drug Discovery (PFDD) panel meeting with the FDA. Caregivers shared their heart-felt personal stories with the FDA in order to communicate the need for improved medical treatments as well as other therapies such as protein replacement and gene therapy. For the first time, Robert, Lauren and I met many other families with children with CDD and that experience was amazing.
Additional thanks to our son Jack along with his fraternity brothers hosted a volleyball fundraiser “SigEp Spike” and raised close to $3,000. (The same amount we raised at the first LMF weekend 10 years ago). We truly appreciate all those who honor Lauren with their contributions.
Happy Thanksgiving,
Robert, Kate, Mary and Lauren
Mark your calendars for the 11th Annual LMF Weekend…..The dates are July 10 and 11, 2020.
Please forward this email to any guests you may have brought to the event and anyone who you think would be interested in our cause.
If they would like to be added to the distribution list, please let me know.
THANKS to all of you, our LMF weekend fundraiser total for 2019 is once again the highest year-to-date!!!
We raised over $45,000 in 2 days for foundations and institutions that are working to find a cure and better treatment options for CDKL5 Deficiency Disorder (CDD). Almost $10,000 more than last year.
This year we will donate $50,000 to support the IFCR and well as the ODC at the University of Pennsylvania. Our donation last year to the IFCR has helped to make the brand new Center of Excellence at CHOP a reality. The past 4 or 5 years in the CDD world have met expectations along the lines of clinical trials and research initiatives. The next 5 may be life changing for our community. We are grateful for your continued support, prayers and love. Together we are making a difference.
This is an exciting time for the CDD community. Robert, Lauren and I participated a conference sponsored by the International Foundation for CDKL5 Research (IFCR), in Washington DC. We spent a long day on Capitol Hill meeting with members of congress and their staffers to educate them on the needs of the CDD community. We also had the honor to contribute to a Patient Forum Drug Discovery (PFDD) panel meeting with the FDA. Caregivers shared their heart-felt personal stories with the FDA in order to communicate the need for improved medical treatments as well as other therapies such as protein replacement and gene therapy. For the first time, Robert, Lauren and I met many other families with children with CDD and that experience was amazing.
Additional thanks to our son Jack along with his fraternity brothers hosted a volleyball fundraiser “SigEp Spike” and raised close to $3,000. (The same amount we raised at the first LMF weekend 10 years ago). We truly appreciate all those who honor Lauren with their contributions.
Happy Thanksgiving,
Robert, Kate, Mary and Lauren
Mark your calendars for the 11th Annual LMF Weekend…..The dates are July 10 and 11, 2020.
Please forward this email to any guests you may have brought to the event and anyone who you think would be interested in our cause.
If they would like to be added to the distribution list, please let me know.
Join us for the
10th Annual FXT III Golf Tournament
Friday, July 12th 2019 at 1:00 PM
Stone Harbor Country Club
An open bar and Hors D Oeuvres will follow golf
Reception 6:30 to 10:00
$300 Golf & Cocktail Reception
$100 Cocktail Reception Only
Transportation back to Avalon will be provided!!
Foursome requests ENCOURAGED
Double Ringer Horseshoe Tournament
Saturday, July 13th 2019 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$50 per contestant
Kids Horseshoe Tournament at 10:30 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to:
LMF Foundation, 526 Kimball Turn Westfield, NJ 07090
Credit Card and PayPal donations can be made at laurenmaryfrancisfoundation.org
Happy 2019 Everyone,
Great news from the LMF Foundation.
The summer LMF Weekend raised over $36,500!
In December, we contributed our 2018 annual donation. We donated $45,000 to the International Foundation for CDKL5 Research (IFCR) in Ohio. The IFCR is the central location for families living with CDKL5 Deficiency Disorder (CDD). They have relationships with all the integral medical and research facilities in the United States as well as international. Our donations are earmarked towards projects such as: a CDKL5 Center of Excellence right here at CHOP in Philadelphia, a natural history study also at CHOP, and an international registry for all CDKL5 patients conducted by the Orphan Disease Center (ODC) at UPenn. There are many clinical trials that are currently occurring with the hope of better medicine options to treat seizures as well as models to work towards a cure! Some of the key companies involved in this advancement are Marinus Pharmaceuticals, Amicus Therapeutics, Ultragenyx, Takeda, and Ovid Therapeutics.
The difference between the amount raised at the summer event and the amount donated is credited to people contributing throughout the year, along with numerous company match’s that post at different times. In addition, there are some people who host events to benefit LMF, people who donate to honor a birthday, and friends that sell hats through social media (the green hat went viral this year - you can still get one!!!). We truly appreciate all of these efforts. We want to thank everyone for your continued support because without your generosity and assistance none of this would be possible.
If you donated by check or credit card, you should receive your tax deductible receipt in a separate email shortly. If you do not receive it, please email me.
Mark your calendars for the 10th Annual LMF Weekend…..The dates are July 12 and 13, 2019.
We wish you all a healthy and happy new year and look forward to seeing you soon or on the beaches of Avalon…..Only 110 days until Memorial Day!
Thanks,
Robert, Kate, Mary and Lauren
Please forward this email to anyone who you think would be interested in our cause. If they would like to be added to the distribution list, please let me know.
Great news from the LMF Foundation.
The summer LMF Weekend raised over $36,500!
In December, we contributed our 2018 annual donation. We donated $45,000 to the International Foundation for CDKL5 Research (IFCR) in Ohio. The IFCR is the central location for families living with CDKL5 Deficiency Disorder (CDD). They have relationships with all the integral medical and research facilities in the United States as well as international. Our donations are earmarked towards projects such as: a CDKL5 Center of Excellence right here at CHOP in Philadelphia, a natural history study also at CHOP, and an international registry for all CDKL5 patients conducted by the Orphan Disease Center (ODC) at UPenn. There are many clinical trials that are currently occurring with the hope of better medicine options to treat seizures as well as models to work towards a cure! Some of the key companies involved in this advancement are Marinus Pharmaceuticals, Amicus Therapeutics, Ultragenyx, Takeda, and Ovid Therapeutics.
The difference between the amount raised at the summer event and the amount donated is credited to people contributing throughout the year, along with numerous company match’s that post at different times. In addition, there are some people who host events to benefit LMF, people who donate to honor a birthday, and friends that sell hats through social media (the green hat went viral this year - you can still get one!!!). We truly appreciate all of these efforts. We want to thank everyone for your continued support because without your generosity and assistance none of this would be possible.
If you donated by check or credit card, you should receive your tax deductible receipt in a separate email shortly. If you do not receive it, please email me.
Mark your calendars for the 10th Annual LMF Weekend…..The dates are July 12 and 13, 2019.
We wish you all a healthy and happy new year and look forward to seeing you soon or on the beaches of Avalon…..Only 110 days until Memorial Day!
Thanks,
Robert, Kate, Mary and Lauren
Please forward this email to anyone who you think would be interested in our cause. If they would like to be added to the distribution list, please let me know.
Join us for the
9th Annual
FXT III Golf Tournament
Friday, July 13th 2018 at 1:00 PM
Stone Harbor Country Club
An open bar and Hors D Oeuvres will follow golf
Reception 6:30 to 10:00
$300 Golf & Cocktail Reception
$100 Cocktail Reception Only
Transportation back to Avalon will be provided!!
Foursome requests encouraged
****************************************************
Double Ringer Horseshoe Tournament
Saturday, July 14th 2018 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$25 per contestant
Kids Horseshoe Tournament at 10:30 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation, 526 Kimball Turn Westfield, NJ 07090
Credit Card donations can be made at laurenmaryfrancisfoundation.org
****************************************************************************************************
December, 2017
As our holiday season is upon us and we look forward to a new year, we wanted to say thank you for yet another successful year for the Lauren Mary Francis Foundation (LMF). Our summer fundraiser raised
$31,000 (Another RECORD Year).
We wanted to let you know as of today, we have donated $10,000 to the IFCR (International Foundation for CDKL5 Research) and we also have donated $22,500 to the ODC (Orphan Disease Center) at the University of Pennsylvania specifically earmarked for their CDKL5 program. These donations will be made in memory of Francis X. Thomas III and in honor of Lauren Mary Gorelick. Thank you for your continued support.
We have had a few additional donations that we are grateful for this year. Some donations were from people playing bingo for a good cause and some were thank you gifts for coaches, but most notably, many people made donations in loving memory or our Dad, Edward J. Monahan Jr. Donations totaled $10,000 and that donation will be made to the CDKL5 Program of Excellence at the Orphan Disease Center at the University of Pennsylvania. The most cutting edge scientific research and clinical program for CDKL5. The search for a cure for CDKL5 was top on Dad's list.
Listed below are some ways our previous donations have been used in 2017 and will continue to be used in 2018:
The ODC
* bought new tools and resources to detect and visualize CDKL5 (i.e., antibodies, in situ probes)
* optimized these tools for use in our studies, as well as shared these learnings with the broader community
* built a CDKL5 brain atlas of CDKL5 expression for use by the community
* conducted testing and optimization of CDKL5 animal behaviors for therapeutic testing
* purchased new equipment for measuring electrophysiological differences in the mice
In other CDKL5 news, our dear friend and former neighbor, Andy Plump, spoke at the CDKL5 Forum in Cambridge, MA this fall. He and his company Takeda are supporting CDKL5 efforts and are currently testing some of their drugs in mouse models. This forum is hosted by the Loulou Foundation. Below is a description of the goals of the forum.
"The CDKL5 Forum is a unique community of collaboration and knowledge exchange, made up of leading scientists, clinicians and company representatives from around the world, united in the mission of better understanding the CDKL5 gene and disorder. The objective is to share current research on CDKL5 and to stimulate peer-group discussion and brainstorming around existing and future avenues of research and therapeutic approaches, in order to accelerate treatments and ultimately find cures for this neuro-genetic disorder."
Save the Dates:
Next year, the 9th Annual LMF Weekend will be July 13th and 14th, 2018
FXT III Golf Tournament with Reception on Friday, July 13th
Double Ringer Horseshoe Tournament on Saturday, July 14th
Please look for your 2017 tax deductible receipt for your donation in January via email.
If you do not receive it please let us know.
Total LMF Donations for 2017 is $42,500. Great job.
We wish you all the best in 2018!
Thanks for all the love and support,
Kate, Robert, Mary (and of course Lauren)
Some interesting websites if you would like to explore some key players in the ongoing CDKL5 Research:
louloufoundation.org
marinuspharma.com
amicusrx.com
As our holiday season is upon us and we look forward to a new year, we wanted to say thank you for yet another successful year for the Lauren Mary Francis Foundation (LMF). Our summer fundraiser raised
$31,000 (Another RECORD Year).
We wanted to let you know as of today, we have donated $10,000 to the IFCR (International Foundation for CDKL5 Research) and we also have donated $22,500 to the ODC (Orphan Disease Center) at the University of Pennsylvania specifically earmarked for their CDKL5 program. These donations will be made in memory of Francis X. Thomas III and in honor of Lauren Mary Gorelick. Thank you for your continued support.
We have had a few additional donations that we are grateful for this year. Some donations were from people playing bingo for a good cause and some were thank you gifts for coaches, but most notably, many people made donations in loving memory or our Dad, Edward J. Monahan Jr. Donations totaled $10,000 and that donation will be made to the CDKL5 Program of Excellence at the Orphan Disease Center at the University of Pennsylvania. The most cutting edge scientific research and clinical program for CDKL5. The search for a cure for CDKL5 was top on Dad's list.
Listed below are some ways our previous donations have been used in 2017 and will continue to be used in 2018:
The ODC
* bought new tools and resources to detect and visualize CDKL5 (i.e., antibodies, in situ probes)
* optimized these tools for use in our studies, as well as shared these learnings with the broader community
* built a CDKL5 brain atlas of CDKL5 expression for use by the community
* conducted testing and optimization of CDKL5 animal behaviors for therapeutic testing
* purchased new equipment for measuring electrophysiological differences in the mice
In other CDKL5 news, our dear friend and former neighbor, Andy Plump, spoke at the CDKL5 Forum in Cambridge, MA this fall. He and his company Takeda are supporting CDKL5 efforts and are currently testing some of their drugs in mouse models. This forum is hosted by the Loulou Foundation. Below is a description of the goals of the forum.
"The CDKL5 Forum is a unique community of collaboration and knowledge exchange, made up of leading scientists, clinicians and company representatives from around the world, united in the mission of better understanding the CDKL5 gene and disorder. The objective is to share current research on CDKL5 and to stimulate peer-group discussion and brainstorming around existing and future avenues of research and therapeutic approaches, in order to accelerate treatments and ultimately find cures for this neuro-genetic disorder."
Save the Dates:
Next year, the 9th Annual LMF Weekend will be July 13th and 14th, 2018
FXT III Golf Tournament with Reception on Friday, July 13th
Double Ringer Horseshoe Tournament on Saturday, July 14th
Please look for your 2017 tax deductible receipt for your donation in January via email.
If you do not receive it please let us know.
Total LMF Donations for 2017 is $42,500. Great job.
We wish you all the best in 2018!
Thanks for all the love and support,
Kate, Robert, Mary (and of course Lauren)
Some interesting websites if you would like to explore some key players in the ongoing CDKL5 Research:
louloufoundation.org
marinuspharma.com
amicusrx.com
Say Hi To Lauren
***************************************************
LMF 2016 Thank You
We wanted to thank all of you for making the LMF weekend another huge success.
We have just about hit a record breaking high of $30,000 for 2 days of fun with our family and friends.
$29,742.08 to be exact. (That's $6,000 more than last year.) Please remember, if your company offers a charitable company match, LMF Foundation is likely eligible.
There is some exciting news in the CDKL5 world. Robert and I have spoken to a few key members of this community and listed below are some recent press releases that were sent to us from a fellow CDKL5 parent (as well as the founder of the LouLou Foundation).
1) We announced the award of 11 new research grants and the appointment of our new CDKL5 Program Director and CSO: http://www.louloufoundation.org/loulou-foundation-names-cdkl5-research-grant-program-awardees-and-appoints-cso.html
2) The titles of the 11 new awarded grants along with the names of the institutions and principal investigators have also now been posted on the web-site of the Orphan Disease Center at UPenn. You can see that all of the projects have a strong focus on therapeutic approaches:http://www.med.upenn.edu/orphandisease/odc-grants-awarded.html
3) Amicus Therapeutics, a leading US biotech specializing in rare diseases, made the following press release announcing a new pre-clinical programme for CDKL5 including the pursuit of a protein replacement therapy: http://ir.amicusrx.com/releasedetail.cfm?ReleaseID=978421 (LLF is mentioned at the end of the press release as we were a founder investor in MiaMed). John Crowley the CEO of Amicus is a great guy and himself a rare disease parent twice over and his story was profiled in the book “The Cure” by Geeta Anand and in the 2010 movie “Extraordinary Measures” made by Harrison Ford.
Lastly, Robert found this website which explains the genetics of CDKL5 and its protein in simple terms:
http://www.supporting-cdkl5.co.uk
I included this website, strictly for informational purposes. (not for supporting the CDKL5 efforts in the UK.)
In your free time if you want, you can read about your genes and how they work, specifically CDKL5.
A couple of housekeeping things:
1) Next year's festivities will be July 7th and 8th, 2017!
2) Please forward this email to anyone who you think would be interested in our efforts, and send me their email if they want to be added to the distribution list going forward.
3) Many of you have asked where to purchase the horseshoes we use. I just purchased 6 new sets for next year on AmazonSmile.com supporting Lauren Mary Francis Foundation. They are called "Deluxe Outdoor Rubber Horseshoes Set" made by CSI Cannon Sports Model # 21108 (9 oz. rubber horseshoe). We had 42 teams this year, biggest ever, so you may want to start practicing now.
Thanks again for all of your support. You make this charitable donation possible.
Kate, Robert, Lauren and Mary
LMF 2016 Thank You
We wanted to thank all of you for making the LMF weekend another huge success.
We have just about hit a record breaking high of $30,000 for 2 days of fun with our family and friends.
$29,742.08 to be exact. (That's $6,000 more than last year.) Please remember, if your company offers a charitable company match, LMF Foundation is likely eligible.
There is some exciting news in the CDKL5 world. Robert and I have spoken to a few key members of this community and listed below are some recent press releases that were sent to us from a fellow CDKL5 parent (as well as the founder of the LouLou Foundation).
1) We announced the award of 11 new research grants and the appointment of our new CDKL5 Program Director and CSO: http://www.louloufoundation.org/loulou-foundation-names-cdkl5-research-grant-program-awardees-and-appoints-cso.html
2) The titles of the 11 new awarded grants along with the names of the institutions and principal investigators have also now been posted on the web-site of the Orphan Disease Center at UPenn. You can see that all of the projects have a strong focus on therapeutic approaches:http://www.med.upenn.edu/orphandisease/odc-grants-awarded.html
3) Amicus Therapeutics, a leading US biotech specializing in rare diseases, made the following press release announcing a new pre-clinical programme for CDKL5 including the pursuit of a protein replacement therapy: http://ir.amicusrx.com/releasedetail.cfm?ReleaseID=978421 (LLF is mentioned at the end of the press release as we were a founder investor in MiaMed). John Crowley the CEO of Amicus is a great guy and himself a rare disease parent twice over and his story was profiled in the book “The Cure” by Geeta Anand and in the 2010 movie “Extraordinary Measures” made by Harrison Ford.
Lastly, Robert found this website which explains the genetics of CDKL5 and its protein in simple terms:
http://www.supporting-cdkl5.co.uk
I included this website, strictly for informational purposes. (not for supporting the CDKL5 efforts in the UK.)
In your free time if you want, you can read about your genes and how they work, specifically CDKL5.
A couple of housekeeping things:
1) Next year's festivities will be July 7th and 8th, 2017!
2) Please forward this email to anyone who you think would be interested in our efforts, and send me their email if they want to be added to the distribution list going forward.
3) Many of you have asked where to purchase the horseshoes we use. I just purchased 6 new sets for next year on AmazonSmile.com supporting Lauren Mary Francis Foundation. They are called "Deluxe Outdoor Rubber Horseshoes Set" made by CSI Cannon Sports Model # 21108 (9 oz. rubber horseshoe). We had 42 teams this year, biggest ever, so you may want to start practicing now.
Thanks again for all of your support. You make this charitable donation possible.
Kate, Robert, Lauren and Mary
Join us for the 7th Annual
FXT III Golf Tournament
Friday, July 8th 2016 at 1:00 PM
Stone Harbor Country Club
An open bar and Hors D Oeuvres will follow golf
Reception 6:30 to 10:30
$250 Golf & Cocktail Reception
$100 Cocktail Reception Only
Transportation back to Avalon will be provided!!
Foursome requests encouraged
Double Ringer Horseshoe Tournament
Saturday, July 9th 2016 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$25 per contestant
Kids Horseshoe Tournament at 10:00 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation, 526 Kimball Turn Westfield, NJ 07090
Credit Card donations can be made at laurenmaryfrancisfoundation.org
The dates for the 2016 festivities are July 8th (Lauren's 13th birthday) and 9th. Hope to see you there!
Thank you very much,
Robert, Kate and Mary (and Lauren)
FXT III Golf Tournament
Friday, July 8th 2016 at 1:00 PM
Stone Harbor Country Club
An open bar and Hors D Oeuvres will follow golf
Reception 6:30 to 10:30
$250 Golf & Cocktail Reception
$100 Cocktail Reception Only
Transportation back to Avalon will be provided!!
Foursome requests encouraged
Double Ringer Horseshoe Tournament
Saturday, July 9th 2016 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$25 per contestant
Kids Horseshoe Tournament at 10:00 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation, 526 Kimball Turn Westfield, NJ 07090
Credit Card donations can be made at laurenmaryfrancisfoundation.org
The dates for the 2016 festivities are July 8th (Lauren's 13th birthday) and 9th. Hope to see you there!
Thank you very much,
Robert, Kate and Mary (and Lauren)
December, 2015
Well it's that time of year again, when we say thank you. Especially at this time of year, it is nice to sit back, reflect, and be grateful for all the wonderful people we have in our lives. So to all of you - THANK YOU!
We once again had an extremely successful LMF weekend. We raised over $24,000 which will be equally donated to CHOP and the IFCR (International Foundation for CDKL5 Research).
There are so many people to thank for all of their contributions to the weekend.
We want to thank the many of you who submitted your donation for a company match donation. These extra donations are extremely generous and greatly appreciated.
We also want to thank Mark Donaphon and Sun Life for donating our giveaways for the horseshoe tournament. The "Cure CDKL5" water bottles will hopefully not only be useful, but also spread awareness about CDKL5.
Of course the monetary donations are important, but so are the food and drink donations, and the time donations to set up and clean up. We appreciate all the little efforts that help the weekend run so smoothly and be so much fun. We really could not do it without you. (you know who you are - thanks!!)
Most importantly, this year I wanted to take a minute to say thank you for carving out a weekend in your busy lives to spend with us, to help us and to support us. Thank you for helping to teach our kids that family and friends are a priority and that we can do great things together. These lessons are invaluable.
The dates for next year's festivities are July 8th (Lauren's 13th birthday) and 9th. Hope to see you there!
Thank you very much,
Robert, Kate and Mary (and Lauren)
Well it's that time of year again, when we say thank you. Especially at this time of year, it is nice to sit back, reflect, and be grateful for all the wonderful people we have in our lives. So to all of you - THANK YOU!
We once again had an extremely successful LMF weekend. We raised over $24,000 which will be equally donated to CHOP and the IFCR (International Foundation for CDKL5 Research).
There are so many people to thank for all of their contributions to the weekend.
We want to thank the many of you who submitted your donation for a company match donation. These extra donations are extremely generous and greatly appreciated.
We also want to thank Mark Donaphon and Sun Life for donating our giveaways for the horseshoe tournament. The "Cure CDKL5" water bottles will hopefully not only be useful, but also spread awareness about CDKL5.
Of course the monetary donations are important, but so are the food and drink donations, and the time donations to set up and clean up. We appreciate all the little efforts that help the weekend run so smoothly and be so much fun. We really could not do it without you. (you know who you are - thanks!!)
Most importantly, this year I wanted to take a minute to say thank you for carving out a weekend in your busy lives to spend with us, to help us and to support us. Thank you for helping to teach our kids that family and friends are a priority and that we can do great things together. These lessons are invaluable.
The dates for next year's festivities are July 8th (Lauren's 13th birthday) and 9th. Hope to see you there!
Thank you very much,
Robert, Kate and Mary (and Lauren)
Join us for the
6th Annual
FXT III Golf Tournament
Friday, July 10th 2015 at 2:00 PM
Stone Harbor County Club
An open bar and Hors D Oeuvres will follow golf
$250 Golf & Cocktail Reception
$100 Cocktail Reception Only
Transportation back to Avalon will be provided!!
Foursome requests encouraged
Double Ringer Horseshoe Tournament
Saturday, July 11th 2015 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$20 per contestant
Kids Horseshoe Tournament at 10:00 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation or
Credit Card donations can be made at laurenmaryfrancisfoundation.org
6th Annual
FXT III Golf Tournament
Friday, July 10th 2015 at 2:00 PM
Stone Harbor County Club
An open bar and Hors D Oeuvres will follow golf
$250 Golf & Cocktail Reception
$100 Cocktail Reception Only
Transportation back to Avalon will be provided!!
Foursome requests encouraged
Double Ringer Horseshoe Tournament
Saturday, July 11th 2015 at 4:00 PM, 17th Street Beach
Hotdogs and Corona Lights will be provided
$20 per contestant
Kids Horseshoe Tournament at 10:00 AM ($5)
RSVP to kategorelick@yahoo.com or (908) 578-5081
Checks can be made payable to: LMF Foundation or
Credit Card donations can be made at laurenmaryfrancisfoundation.org
November 27, 2014
a special thank you - LMF 2014
As i sit here while the snow is coming down outside, i really wish i was on a warm avalon beach!!
Seriously, at this time of year, we are reminded about the many gifts we have been given, especially the wonderful people in our lives for which we are thankful. We are thankful to all of you for making our LMF charity so successful.
The 5th Annual LMF Foundation weekend raised over $22,000!!!! A huge success again and $5,000 more than last year's total. We plan to donate $11,000 to the IFCR (International Foundation of CDKL5 Research) and $11,000 to CHOP (Children's Hospital of Philadelphia). These two institutions help numerous children everyday affected with rare genetic disorders such as CDKL5.
Exciting news for 2015: There is a new Natural History Study for CDKL5 which is being funded by the IFCR and one of the participating locations is CHOP. Under the direction of Dr. Eric Marsh, the study will begin in early 2015, and Lauren is scheduled to participate and see Dr. Marsh in February. This study coupled with the opening of a third CDKL5 Center of Excellence is proof that our generous donations are being put to good use. These efforts will hopefully bring us closer to a cure and better treatment for all the children affected with rare diseases such as CDKL5 and Rett Syndrome.
Thank you from the bottom of our hearts.
Happy Thanksgiving! We are grateful for our many blessings!!
Kate, Robert, Mary and Lauren
The 2014 Double Ringer Horseshoe Tournament
July 12th
August 16, 2013
The 4th Annual FXT III Golf Tournament and Double Ringer Horseshoe Tournament weekend was a huge success this year. We wanted to thank you for your continued support and your participation!! Our weekend festivities raised over $17,000 dollars. (that's $4,000 more than last year)
Earlier in the year, we also had some additional contributions made to the LMF Foundation. The first was from many of our friends in Westfield who donated over $2,500 to LMF in honor of Robert's 40th birthday. The second was from our brother Ed, who raised close to $4,000 dollars while participating in the "Escape from the Cape" Triathlon. With this growing support for the 2013 year, we intend to donate $12,000 to the International Foundation of CDKL5 Research (IFCR) and $12,000 to Children's Hospital in Philadelphia (CHOP).
One quick example of how your generous donations are being put to work: This fall the IFCR is opening their 2nd Center of Excellence at the Boston Children's Hospital. This quote is from a recent press release, "IFCR's vision in establishing these centers is to foster physician expertise in CDKL5, and thereby establish diagnostic, therapeutic and preventative standards of care. We are proud to partner with Boston Children's Hospital in order to improve the quality of life and to find a cure for our children." This and other news can be found on the CDKL5.com website.
Please visit our website: laurenmaryfrancisfoundation.org for current news or if you know anyone else who would like to contribute. Contributions can be made online through palpay or with a credit card. Contributions can also be made with a check mailed to LMF Foundation at 526 Kimball Turn, Westfield, NJ 07090.
Lastly, a few logistics:
1 - All of the tax deductible receipts have been mailed. If you did not receive one, please let me know and I will be happy to send you another one.
2 - The 5th Annual FXT III Golf Tournament will be held Friday July 11th, 2014. Mark your calendars now and pray for no rain.
3 - The 5th Annual Double Ringer Horseshoe Tournament will be held Saturday July 12th, 2014. We had a full 32 team field this year. (you may want to get your teams in early for next year) In addition, we hope to continue the new kids horseshoe tournament which was held saturday morning this year with the winner of the tournament qualifying to play in the adult tournament.
4 - Please forward this email to anyone who would be interested and cc me so I can include them on future emails.
Thank you again for all of your tremendous support. We (and Lauren) appreciate it more than you know!! Enjoy the rest of the summer!!
Kate, Robert and Mary
The 4th Annual FXT III Golf Tournament and Double Ringer Horseshoe Tournament weekend was a huge success this year. We wanted to thank you for your continued support and your participation!! Our weekend festivities raised over $17,000 dollars. (that's $4,000 more than last year)
Earlier in the year, we also had some additional contributions made to the LMF Foundation. The first was from many of our friends in Westfield who donated over $2,500 to LMF in honor of Robert's 40th birthday. The second was from our brother Ed, who raised close to $4,000 dollars while participating in the "Escape from the Cape" Triathlon. With this growing support for the 2013 year, we intend to donate $12,000 to the International Foundation of CDKL5 Research (IFCR) and $12,000 to Children's Hospital in Philadelphia (CHOP).
One quick example of how your generous donations are being put to work: This fall the IFCR is opening their 2nd Center of Excellence at the Boston Children's Hospital. This quote is from a recent press release, "IFCR's vision in establishing these centers is to foster physician expertise in CDKL5, and thereby establish diagnostic, therapeutic and preventative standards of care. We are proud to partner with Boston Children's Hospital in order to improve the quality of life and to find a cure for our children." This and other news can be found on the CDKL5.com website.
Please visit our website: laurenmaryfrancisfoundation.org for current news or if you know anyone else who would like to contribute. Contributions can be made online through palpay or with a credit card. Contributions can also be made with a check mailed to LMF Foundation at 526 Kimball Turn, Westfield, NJ 07090.
Lastly, a few logistics:
1 - All of the tax deductible receipts have been mailed. If you did not receive one, please let me know and I will be happy to send you another one.
2 - The 5th Annual FXT III Golf Tournament will be held Friday July 11th, 2014. Mark your calendars now and pray for no rain.
3 - The 5th Annual Double Ringer Horseshoe Tournament will be held Saturday July 12th, 2014. We had a full 32 team field this year. (you may want to get your teams in early for next year) In addition, we hope to continue the new kids horseshoe tournament which was held saturday morning this year with the winner of the tournament qualifying to play in the adult tournament.
4 - Please forward this email to anyone who would be interested and cc me so I can include them on future emails.
Thank you again for all of your tremendous support. We (and Lauren) appreciate it more than you know!! Enjoy the rest of the summer!!
Kate, Robert and Mary
August 10, 2012
We wanted to thank you again for another tremendously successful and fun event this year!!!!
Together with the FXT Golf Classic and the Double Ringer Horseshoe Tournament we raised over $13,000!!!!!! It is amazing that in one weekend with a couple of friends, we can raise that much money.
100% of the money raised will be donated to the International Foundation for CDKL5 Research (IFCR) and the Children's Hospital of Philadelphia (CHOP).
Please check out our website - laurenmaryfrancisfoundation.org and the cdkl5.com website for more information on our cause.
We look forward to the 4th Annual on Friday July 12th and Saturday July 13th, 2013.
We truly appreciate your friendship and support!!!!
Thanks - Kate, Robert and Mary
We wanted to thank you again for another tremendously successful and fun event this year!!!!
Together with the FXT Golf Classic and the Double Ringer Horseshoe Tournament we raised over $13,000!!!!!! It is amazing that in one weekend with a couple of friends, we can raise that much money.
100% of the money raised will be donated to the International Foundation for CDKL5 Research (IFCR) and the Children's Hospital of Philadelphia (CHOP).
Please check out our website - laurenmaryfrancisfoundation.org and the cdkl5.com website for more information on our cause.
We look forward to the 4th Annual on Friday July 12th and Saturday July 13th, 2013.
We truly appreciate your friendship and support!!!!
Thanks - Kate, Robert and Mary
