September 28, 2009
October marks official Rett Syndrome Awareness month. Our time for action is now! Rett syndrome has immeasurable impact on our children, our families, and our community. It is the leading cause of severe impairment in girls yet the general public still doesn’t know about it. Let’s change this. We need the world to embrace our children and help us reach for a cure. We would like to encourage you, with our support behind you, to get out there and spread the news about Rett syndrome. This edition of the IRSFlash is dedicated to helping you do your part in October to educate your family, friends and community about Rett syndrome and our shared fight for a cure.
IRSF hosted a series of October Awareness Month: Top 10 Ideas and Tips conference calls throughout August and September. Visit the website to read the Top 10 lists, listen to the audio recording, and to download supporting materials.
IRSF offers so many different ways for you to get involved. We are here to help you be successful! Read on to find out more, and thank you for your commitment. Each of you makes this community stronger.
The majority of funding for IRSF research grants comes from private donors such as you, your family members, and friends. Every dollar counts. Every dollar makes a difference in the lab of a qualified researcher. Take part in our Care and Cure Café or our Phantom Tea fundraisers. These are great ways to get personal with raising money for the cause.
If you or someone you know is hosting an event in honor of a special Rett angel please let us know – we can advertise it on our website calendar and flashes! We can also help you design and send out your invitations, save the dates, email blasts and so much more. Please email all event details to Jenni Grammer at jgrammer@rettsyndrome.org. IRSF can offer plenty of support for your event – call the office or email us for more details!
13th annual Phantom Tea fundraiser!
This virtual tea party makes it so easy for your friends and family to become involved! Last year’s new addition of the online Care and Cure Café allows parents to host an online fundraiser in honor of their daughter where friends and family can donate “drinks” in honor of the Rett angel of their choice from all over the country. Parents can also take advantage of our annual phantom tea mailing fundraiser and mail tea packets to loved ones to spark them to donate.
2009 Phantom Tea
This year, the Phantom Tea fundraiser has a new look and feel – we decided to jazz it up a bit for you! For those of you that have participated in the past, you know the drill! Send us your orders and we’ll send you your Phantom Tea invitations! For those of you who are new to this IRSF fundraiser, Phantom Tea is a virtual tea party for you, your friends, and family to hold in honor of the Rett angel in your life! It’s a great way to hold your own fundraiser without the hustle and bustle of hosting an actual event. Each tea packet comes with tea invitations/envelopes, contribution cards/reply envelopes, donor reply postcards, thank you cards/ envelopes and of course…tea bags! Each kit has 10 sets. You can order as many as you wish! Spread the word and order your 2009 Phantom Tea materials by filling out the attached order form and mail in or email it to jgrammer@rettsyndrome.org or call 1-800-818-RETT.
The IRSF Care and Cure Café
Many of you have asked for the ability to host an online fundraiser. Last year we created the first IRSF Online Café! We have made it even easier for you to give something special to the Rett angel who has touched your life. In the past year, over 30 families from all over the world have created Care and Cure Café pages for their Rett angels. The toasts that family and friends have made are so touching and each “drink” purchased has helped us get one step closer to finding treatments and a cure for this devastating disorder. Join us as we share stories and pictures of the beautiful girls and women that have become a part of the IRSF family. Here’s how it works - in the next couple of weeks an email blast will be going out to all of the families connected to IRSF that we have an email address on file for. In that email there will be two links – one that you will use to upload a current picture of your Rett angel as well as a toast to her with a brief bio about her life! These will be used to create her very own donation page through the Care and Cure Café! The 2nd link is the link straight to the Café’s homepage. You should send this link out to all of your friends, colleagues and family who you think would be interested in helping out. Many people prefer this online fundraiser because it is so fast and user friendly!
If you already have a Care and Cure Café page, please consider inviting friends and family to participate again for October Awareness Month! Do we have your correct email address? Please contact jgrammer@rettsyndrome.org or call 1800-818-RETT with the correct email address to ensure that you receive the invitation to the Care and Cure Café.
So, there it is; two fast and easy ways to invite caring friends and family to support our Rett angels, and help make their future brighter by helping to accelerate cures and treatments of Rett syndrome. Pop in to a convenient and virtual café or tea room to get in on the fun. To mark Rett Syndrome Awareness Month, IRSF invites everyone to share a story and a drink in honor of every Rett angel close to you!
October Rett Awareness T-Shirt Contest
It’s time to make Rett syndrome a fashion statement not just for us but for our Rett angels too!!! Take part in our October Rett Awareness T-Shirt Contest by submitting your very own t-shirt design idea for our next Rett syndrome t-shirt. We want this shirt to be designed especially for our angels! Keep in mind that some of our angels are in wheel chairs so these shirts need to have all the fun and flare on the front that may normally be hidden on the back! Also, remember that we have girls, boys and adults with Rett syndrome too and everyone wants to be included in the fun! Keep the wording short and sweet but remember to make it catchy enough to grab the eye of a stranger and RAISE AWARENESS!
Are you a great artist? Submit an actual design that you drew, sketched or created on the computer! Anything is possible.
Are you creative with a good idea but just not an artist? Just submit a detailed description of your t-shirt idea! We will try to envision what you were thinking!
Sample:
Have this saying written in a soft but legible blue font across the chest of a white t-shirt with the IRSF logo in the upper left corner:
“To Know Me Is To Love Me.”
All submissions should be sent to Lisa Hayden at LHayden@rettsyndrome.org or 4600 Devitt Drive Cincinnati , OH 45246
All submissions are due by October 25th! So get creative and start drafting your idea today!
Call the office at 1-800-818-7388 for any questions you may have!
Merchandise Sale
October Awareness Month is a great time to purchase some new Rett syndrome awareness gear for you, your family, and your friends! Starting October 1st certain Awareness items will be on sale. Our big sellers, the “I love someone with Rett syndrome” T-shirts, will be on sale for just $15.00. IRSF hats will be only $12.00, mugs will be $10.00 and magnets will be $2.75! Don’t wait! Get your chance to get your IRSF merchandise for less during October Awareness Month!
Oprah Speak for Silent Angels and the Children Helping in a Cause Campaign
On behalf of all those affected by Rett syndrome, IRSF would like to express their gratitude to Lora Barrick-Ramirez for her incredible efforts in spearheading the Oprah Speak for Silent Angels Campaign (OSSA) and the Children Helping in a Cause Campaign (CHIC). IRSF has pledged to assist with this initiative, in anyway they can, to ensure all is done to allow Oprah Winfrey to hear our plea.
Lora’s daughter, Brenna (age 14), was diagnosed with Rett syndrome less than one year ago. Brenna had been diagnosed with Cerebral Palsy for quite some time, but Lora’s motherly instincts told her it was not right; that she did not have CP. After pushing for additional testing, a positive MECP2 result was received in June of 2009. In this short time of being in the “Rett World,” Lora has become determined to spread awareness so that all families affected by Rett syndrome no longer have to explain what it is and that it is as familiar to the world as Cancer or Autism. The hope is that with awareness and knowledge will come support and with support will come a cure.
A few successes to date:
- In just a few short weeks, the OSSA Facebook page has close to 1,200 members
- The following website has been launched to offer the information to everyone who wishes to become involved: www.rettsyndromeawareness.com.
- A Rett awareness video is being created; close to 300 pictures have been submitted
- Ayme Sanchez, singer/song writer, has agreed to share her Rett syndrome song, along with various other artists. A DVD featuring these beautifully written songs for those affected by Rett syndrome in being created and will be available in the New Year.
- Jean Marc and France Genereux, choreographers for the So You Think You Can Dance television show, have offered their support to OSSA; they will tell their story in the video
- Mrs. Texas International, Bonnie Hubert, has agreed to support this campaign
- Lora will attend the Houston, TX Strollathon on October 31st as well as the Clint and Kevin Black IRSF benefit concert on November 1st; letters will be collected at these events
- A second IRSF Road Scholar truck is being unveiled in Texas and will deliver the letters to Oprah, in Chicago, in the New Year!
Looking ahead:
- School awareness campaign, Children Helping in a Cause (CHIC), is underway to assist with the ask to Oprah. Students all over the United States are being asked to write a letter to Oprah to ask for her help; they are also being asked to turn in a quarter with each letter to take part in the Quarters for a Cause Campaign.
- The IRSF staff and Board of Directors, as well as Kevin Black and his manager, have pledged to work hand in hand with Lora
To join this effort, please contact Lora Barrick-Ramirez at lora_barrick@yahoo.com or Jennifer Endres at jendres@rettsyndrome.org.
Stay tuned for more details…there is a whole team working on this campaign…the ideas and contacts are amazing!
Clint and Kevin Black invite you to join them for an entire weekend devoted to Spending Time Ending Rett...
Road Scholar Transport
As you know, IRSF has been participating in the 10,000,000 miles to a cure campaign. Will you help us thank Jim Barrett, founder of the Road Scholar program? Please email messages of appreciation to Lisa Hayden at lhayden@rettsyndrome.org.
Road Scholar Transport’s customers are actively sponsoring a “charity truck” and for every mile that truck drives they make a donation to the charity.
Get involved. Make a difference. VOTE NOW!
www.roadscholar.com/charities.html
Who says cookies aren't good for you?
The Christie Cookie Company is thanking its consumers by donating $25,000 to a charity “you” choose. Click on the link below and nominate your favorite charity, IRSF, to win. Delicious cookies, helping people you care about, and $25,000 for charity... who knew a little cookie company and your sweet tooth could do so much good!
Vote for IRSF today: ilovechristiecookies.com/contest/ (listed under “International Rett Syndrome Foundation – Cincinnati, OH)
Casting 4 A Cure
by Kara
It all started when Bill Farnum found out that his daughter Ella was diagnosed with Rett syndrome. Bill wanted to find a way to help raise money to find a cure for Rett Syndrome, so he decided to combine passions to make a difference for Ella and other children afflicted with this potentially curable disease. So with this second Casting 4 a Cure event this summer, Bill decided to head to Victor, ID (a.k.a. fly fishing mecca) with 20 teams of two people each to fish and raise money for the International Rett Syndrome Foundation. A team from Cloudveil including Mr. Steve Sullivan himself and a team from Fishpond including co-founders John LeCoq and Dave Thompson will be among the lucky participants. Have a blast out there and catch some fish for a cure.
Check out more information about the tournament here, and see how you can help Bill and Ella’s fight against Rett Syndrome here.
Mixed Bag Designs Fundraiser
An innovative, affordable and profitable fundraiser!
MixedBagDesigns’ reusable bags were introduced in 2008, yet have already made thousands of dollars for clubs, team and schools across the nation. Offering a unique and fresh approach to fundraising, these bags are bold, adorable, affordable and green.
GOOD for the planet – GOOD for the community – GOOD for you!
Saving the Earth...One Bag at a Time!
If interested in conducting this fundraiser, please contact:
Mixedbagdesigns@sbcglobal.net
www.mixedbagdesigns.com
818-566-8733
813-857-8169c
Get materials from IRSF’s website and post them around your community. Or get a media kit from IRSF and call your local media and get them to do a story on Rett syndrome. And at the very least, educate yourself. Visit our site and see everything IRSF has to offer.
Oprah Speak for Silent Angels Campaign
On behalf of all those affected by Rett syndrome, IRSF would like to express their gratitude to Lora Barrick-Ramirez for her incredible efforts in spearheading the Oprah Speak for Silent Angels Campaign (OSSA). IRSF has pledged to assist with this initiative, in anyway they can, to ensure all is done to allow Oprah Winfrey to hear our plea.
Lora’s daughter, Brenna (age 14), was diagnosed with Rett syndrome less than one year ago. Brenna had been diagnosed with Cerebral Palsy for quite some time, but Lora’s motherly instincts told her it was not right; that she did not have CP. After pushing for additional testing, a positive MECP2 result was received in June of 2009. In this short time of being in the “Rett World,” Lora has become determined to spread awareness so that all families affected by Rett syndrome no longer have to explain what it is and that it is as familiar to the world as Cancer or Autism. The hope is that with awareness and knowledge will come support and with support will come a cure.
A few successes to date:
- In just a few short weeks, the OSSA Facebook page has close to 1,000 members
- A request for letters from families was put out and to date close to 5,000 letters have been collected
- A Rett awareness video is being created; close to 300 pictures have been submitted
- Ayme Sanchez, singer/song writer, has agreed to share her Rett syndrome song, making it available on ITUNES for download with all proceeds going to IRSF
- Jean Marc and France Genereux, choreographers for the So You Think You Can Dance television show, have offered their support to OSSA; they will tell their story in the video
- Lora will attend the Houston, TX Strollathon on October 31st as well as the Clint and Kevin Black IRSF benefit concert on November 1st; letters will be collected at these events
- A second IRSF Road Scholar truck is being unveiled in Texas and will deliver the letters to Oprah, in Chicago, in the near future!
Looking ahead:
- Timeline for OSSA campaign/execution is being created
- School Awareness Campaign is underway to assist with the ask to Oprah
- The IRSF staff and Board of Directors, as well as Kevin Black and his manager, have pledged to work hand in hand with Lora
To join this effort, please contact Lora Barrick-Ramirez at lora_barrick@yahoo.com or Jennifer Endres at jendres@rettsyndrome.org.
Stay tuned for more details…there is a whole team working on this campaign…the ideas and contacts are amazing!
Governor Proclamations
October is Rett Syndrome Awareness Month in the USA, and it is an exciting time for fundraising and gatherings for IRSF families. Work has already begun. The newest addition to this work and excitement is IRSF’s Grandparents Network. A goal of the Advocacy and Awareness Committee of IRSF’s Family Advisory Board is to increase the number of states whose governors declare October to be Rett Syndrome Awareness Month. Some in the Grandparents’ Network, along with Regional Reps and other IRSF members, are making heroic efforts to obtain the proclamations, and some are already in hand. For a group that has been only recently established within IRSF, the Grandparents’ Network has proven itself to be an energetic and blessed addition to the cause of improving the lives of those with Rett Syndrome.
- Arkansas State Proclamation - Obtained by Jan Townsley, mother of Crystal (29)
- Illinois State Proclamation - Obtained by Marcia Adamski, Illinois Regional Representative (PDF Coming Soon)
- Indiana State Proclamation - Obtained by Susan Dockter, mother of Sarah Beth/ RTT (27)
- Florida Letter of Recognition - Obtained by Pat and Larry Calderazzi, grandparents of Charlotte/RTT (5)
- Kentucky State Proclamation - Obtained by Jess Steventon, Kentucky/Tennessee Regional Representative
- Pennsylvania State Proclamation - Obtained by Donna Wright, grandmother of Naomi/rtt, age 6 and Grandparent Representative - Mid Atlantic Region
- Mississippi State Proclamation - Obtained by Diane Lee, Mississippi Regional Representative and Grandparent of Mary Claire Lee/ RTT (9)
- Tennessee State Proclamation - Obtained by Jess Steventon, Kentucky/Tennessee Regional Representative
- Texas State Proclamation - Obtained by Gay Horelica, Administrative Assistant, Blue Bird Circle Rett Center, Baylor College Of Medicine, Houston, TX
- West Virginia State Proclamation - Obtained by Donna Wright, Grandparent of Naomi/ RTT (6)
EDUCATE YOURSELF – IRSF Family Conference
Announcing 26th Annual Conference Location
"Ain’t No Mountain High Enough"
Cheyenne Mountain Resort
Colorado Springs, CO
Memorial Day Weekend
May 28-31, 2010
Mark your calendars – make your plan!
Who: Every person touched by Rett syndrome - parents, caregivers, professionals.
Why: Invest in yourself – one of the best things you can do for the child or adult in your life with RTT is to educate yourself about the syndrome and the pathways to treatments and a cure.
What: Knowledgeable, respected Rett experts brought together under one roof, for one weekend, dozens of unique sessions – all for you! Unparalleled sessions on research progress, communication, education, life planning issues, medical care, fundraising how-to workshops, marriage/family strengthening workshops, exhibitors and hands-on demos. And the most priceless gift of all: building community, friendship and learning from each other.
Registration will open online January 2010.
Conference Financial Planning Tip:
- Some company Flexible Spending Accounts (FSAs) will reimburse for registration fees, and possibly travel expenses, for education conferences on a diagnosed medical condition with a doctor’s prescription. Most 2010 Benefits and FSA enrollment periods open soon – see if you can take advantage of this opportunity by calling your company’s benefits administration department today!
- Some support agencies understand the life-changing importance of educating parents and caregivers about their child’s diagnosis. Contact your child’s case manager or social worker to ask what expenses could possibly be covered: registration fees, travel, session recordings, or additional respite hours.
- Contact local service organizations such as Lion’s Club or Kiwanis International for their sponsorship or support.
IRSF Family Advisory Board - APPLY NOW!
We encourage interested family members to apply for the IRSF Family Advisory Board by November 14, 2009
Make a difference for all families touched by Rett syndrome! The IRSF Family Advisory Board is comprised of 15 active, passionate members who bring personal and professional talents and skills to the table to help advise IRSF on Family Support programs and services. We seek family members (mothers, fathers, grandparents, aunts, uncles, adult siblings, etc) who especially have expertise within the following areas:
- An individual with RTT: young child, school-age child, teen, young adult, older woman, or an individual with RTT who has passed away
- Family make-up: Married, single, divorced, remarried, or adopted child
- Therapies: especially OT, PT, Speech/Communication, Nutrition, Marital/Family
- Medical
- Residential Placement
- Special needs law
- Support services
- Advocacy
- Public relations, media reporting
- Fundraising
- Programs/services/materials development and copywriting
Click here for more details and to download an application
Consider - then apply - deadline is November 14, 2009
SHARE YOUR PICTURES WITH US!
We would love to see any pictures you have of your girls, your events or anything you think we could use for our website or future Angel Gallery! Just email them to Lhayden@rettsyndrome.org or mail them to the office attn: Lisa Hayden (address below). Make sure to request a picture authorization form first.
DO YOU KNOW YOUR REGIONAL REPRESENTATIVE?
IRSF has an entire team of individuals out there who wish to support you in anyway you need. Whether you want to take part in a family gathering or fundraiser, wish to meet other families, just want to talk, or have questions about programs and services in your area – your Regional Rep is there for you!
Please contact your Rep today to be sure you are on his/her list of families and to learn what is going on in your state/region. Please contact Jennifer Endres if you have trouble connecting with your Rep.
*Please contact your Regional Rep to give your current contact information if you have had any changes recently.
- September 26, 2009: Chandler, AZ | 5th Annual AZ Golf Tournament
- September 26, 2009: Wrightsville Beach, NC | 3rd Annual Wrightsville Beach Strollathon
- September 26, 2009: Goodlettsville, TN | TN - KY Family Picnic/Kick-off
- September 26, 2009: Portland, OR | Portland Strollathon
- September 27, 2009: Bronx, NY | Friends Of Rett Family Gathering
- September 27, 2009: Wheaton, MD | Family Picnic - VA/MD/DC
- September 29, 2009: Powell, OH | Silpada IRSF Fundraiser
- October 2, 2009: Portland, CT | 12th Annual CT Golf Tournament
- October 4-5, 2009: Oakland, CA | Natural History Research Study - Oakland
- October 4, 2009: Wilmington, DE | Delaware Run/Walk For Rett
- October 4, 2009: Lincroft, NJ | New Jersey Strollathon
- October 10, 2009: Sowney, CA | Southern California Family Picnic
- October 10, 2009: North Manchester, IN | Indiana Family Picnic
- October 11, 2009: Chicago, IL | Miles For Mary Claire
- October 11, 2009: Fort Lee, NJ | NY/CT/NJ Tri-state Strollathon
- October 13, 2009: Houston, TX | Texas Children's Hospital Awareness Day
- October 17, 2009: Ridgeland, MS | Miles For Mary Claire
- October 17, 2009: Fairfax, VA | 4th Annual Fairfax Strollathon
- October 17, 2009: Chico CA | 1st Annual Chico CA Strollathon
- October 17, 2009: Irving, TX | 3rd Annual Forever Angels Pageant
- October 17, 2009: Idaho Falls, ID | Write And Raffle For Rett
- October 22, 2009: Boston, MA | 9th Annual Boston Festival Of Food & Wine
- October 23, 2009: San Diego, CA | 1st Annual Rett Monster Bash
- October 24, 2009: Harrisburg, PA | The Annual Monster Bash - PA
- October 31, 2009: Petal, MS | Miles For Mary Claire
- October 31, 2009: Houston, TX | 1st Annual Houston Strollathon
“Nothing great was ever achieved without enthusiasm.”
~ Ralph Waldo Emerson
[SUBSCRIPTIONS]
October marks official Rett Syndrome Awareness month. Our time for action is now! Rett syndrome has immeasurable impact on our children, our families, and our community. It is the leading cause of severe impairment in girls yet the general public still doesn’t know about it. Let’s change this. We need the world to embrace our children and help us reach for a cure. We would like to encourage you, with our support behind you, to get out there and spread the news about Rett syndrome. This edition of the IRSFlash is dedicated to helping you do your part in October to educate your family, friends and community about Rett syndrome and our shared fight for a cure.
IRSF hosted a series of October Awareness Month: Top 10 Ideas and Tips conference calls throughout August and September. Visit the website to read the Top 10 lists, listen to the audio recording, and to download supporting materials.
IRSF offers so many different ways for you to get involved. We are here to help you be successful! Read on to find out more, and thank you for your commitment. Each of you makes this community stronger.
The majority of funding for IRSF research grants comes from private donors such as you, your family members, and friends. Every dollar counts. Every dollar makes a difference in the lab of a qualified researcher. Take part in our Care and Cure Café or our Phantom Tea fundraisers. These are great ways to get personal with raising money for the cause.
If you or someone you know is hosting an event in honor of a special Rett angel please let us know – we can advertise it on our website calendar and flashes! We can also help you design and send out your invitations, save the dates, email blasts and so much more. Please email all event details to Jenni Grammer at jgrammer@rettsyndrome.org. IRSF can offer plenty of support for your event – call the office or email us for more details!
13th annual Phantom Tea fundraiser!
This virtual tea party makes it so easy for your friends and family to become involved! Last year’s new addition of the online Care and Cure Café allows parents to host an online fundraiser in honor of their daughter where friends and family can donate “drinks” in honor of the Rett angel of their choice from all over the country. Parents can also take advantage of our annual phantom tea mailing fundraiser and mail tea packets to loved ones to spark them to donate.2009 Phantom Tea
The IRSF Care and Cure Café
If you already have a Care and Cure Café page, please consider inviting friends and family to participate again for October Awareness Month! Do we have your correct email address? Please contact jgrammer@rettsyndrome.org or call 1800-818-RETT with the correct email address to ensure that you receive the invitation to the Care and Cure Café.
So, there it is; two fast and easy ways to invite caring friends and family to support our Rett angels, and help make their future brighter by helping to accelerate cures and treatments of Rett syndrome. Pop in to a convenient and virtual café or tea room to get in on the fun. To mark Rett Syndrome Awareness Month, IRSF invites everyone to share a story and a drink in honor of every Rett angel close to you!
October Rett Awareness T-Shirt Contest
It’s time to make Rett syndrome a fashion statement not just for us but for our Rett angels too!!! Take part in our October Rett Awareness T-Shirt Contest by submitting your very own t-shirt design idea for our next Rett syndrome t-shirt. We want this shirt to be designed especially for our angels! Keep in mind that some of our angels are in wheel chairs so these shirts need to have all the fun and flare on the front that may normally be hidden on the back! Also, remember that we have girls, boys and adults with Rett syndrome too and everyone wants to be included in the fun! Keep the wording short and sweet but remember to make it catchy enough to grab the eye of a stranger and RAISE AWARENESS!Are you a great artist? Submit an actual design that you drew, sketched or created on the computer! Anything is possible.
Are you creative with a good idea but just not an artist? Just submit a detailed description of your t-shirt idea! We will try to envision what you were thinking!
Sample:All submissions should be sent to Lisa Hayden at LHayden@rettsyndrome.org or 4600 Devitt Drive Cincinnati , OH 45246
Have this saying written in a soft but legible blue font across the chest of a white t-shirt with the IRSF logo in the upper left corner:
“To Know Me Is To Love Me.”
All submissions are due by October 25th! So get creative and start drafting your idea today!
Call the office at 1-800-818-7388 for any questions you may have!
Merchandise Sale
October Awareness Month is a great time to purchase some new Rett syndrome awareness gear for you, your family, and your friends! Starting October 1st certain Awareness items will be on sale. Our big sellers, the “I love someone with Rett syndrome” T-shirts, will be on sale for just $15.00. IRSF hats will be only $12.00, mugs will be $10.00 and magnets will be $2.75! Don’t wait! Get your chance to get your IRSF merchandise for less during October Awareness Month!Oprah Speak for Silent Angels and the Children Helping in a Cause Campaign
On behalf of all those affected by Rett syndrome, IRSF would like to express their gratitude to Lora Barrick-Ramirez for her incredible efforts in spearheading the Oprah Speak for Silent Angels Campaign (OSSA) and the Children Helping in a Cause Campaign (CHIC). IRSF has pledged to assist with this initiative, in anyway they can, to ensure all is done to allow Oprah Winfrey to hear our plea.Lora’s daughter, Brenna (age 14), was diagnosed with Rett syndrome less than one year ago. Brenna had been diagnosed with Cerebral Palsy for quite some time, but Lora’s motherly instincts told her it was not right; that she did not have CP. After pushing for additional testing, a positive MECP2 result was received in June of 2009. In this short time of being in the “Rett World,” Lora has become determined to spread awareness so that all families affected by Rett syndrome no longer have to explain what it is and that it is as familiar to the world as Cancer or Autism. The hope is that with awareness and knowledge will come support and with support will come a cure.
A few successes to date:
- In just a few short weeks, the OSSA Facebook page has close to 1,200 members
- The following website has been launched to offer the information to everyone who wishes to become involved: www.rettsyndromeawareness.com.
- A Rett awareness video is being created; close to 300 pictures have been submitted
- Ayme Sanchez, singer/song writer, has agreed to share her Rett syndrome song, along with various other artists. A DVD featuring these beautifully written songs for those affected by Rett syndrome in being created and will be available in the New Year.
- Jean Marc and France Genereux, choreographers for the So You Think You Can Dance television show, have offered their support to OSSA; they will tell their story in the video
- Mrs. Texas International, Bonnie Hubert, has agreed to support this campaign
- Lora will attend the Houston, TX Strollathon on October 31st as well as the Clint and Kevin Black IRSF benefit concert on November 1st; letters will be collected at these events
- A second IRSF Road Scholar truck is being unveiled in Texas and will deliver the letters to Oprah, in Chicago, in the New Year!
Looking ahead:
- School awareness campaign, Children Helping in a Cause (CHIC), is underway to assist with the ask to Oprah. Students all over the United States are being asked to write a letter to Oprah to ask for her help; they are also being asked to turn in a quarter with each letter to take part in the Quarters for a Cause Campaign.
- The IRSF staff and Board of Directors, as well as Kevin Black and his manager, have pledged to work hand in hand with Lora
To join this effort, please contact Lora Barrick-Ramirez at lora_barrick@yahoo.com or Jennifer Endres at jendres@rettsyndrome.org.
Stay tuned for more details…there is a whole team working on this campaign…the ideas and contacts are amazing!
Clint and Kevin Black invite you to join them for an entire weekend devoted to Spending Time Ending Rett...
Road Scholar Transport
As you know, IRSF has been participating in the 10,000,000 miles to a cure campaign. Will you help us thank Jim Barrett, founder of the Road Scholar program? Please email messages of appreciation to Lisa Hayden at lhayden@rettsyndrome.org.Road Scholar Transport’s customers are actively sponsoring a “charity truck” and for every mile that truck drives they make a donation to the charity.
Get involved. Make a difference. VOTE NOW!
www.roadscholar.com/charities.html
Who says cookies aren't good for you?
The Christie Cookie Company is thanking its consumers by donating $25,000 to a charity “you” choose. Click on the link below and nominate your favorite charity, IRSF, to win. Delicious cookies, helping people you care about, and $25,000 for charity... who knew a little cookie company and your sweet tooth could do so much good!Vote for IRSF today: ilovechristiecookies.com/contest/ (listed under “International Rett Syndrome Foundation – Cincinnati, OH)
Casting 4 A Cure
by Kara
|
|
It all started when Bill Farnum found out that his daughter Ella was diagnosed with Rett syndrome. Bill wanted to find a way to help raise money to find a cure for Rett Syndrome, so he decided to combine passions to make a difference for Ella and other children afflicted with this potentially curable disease. So with this second Casting 4 a Cure event this summer, Bill decided to head to Victor, ID (a.k.a. fly fishing mecca) with 20 teams of two people each to fish and raise money for the International Rett Syndrome Foundation. A team from Cloudveil including Mr. Steve Sullivan himself and a team from Fishpond including co-founders John LeCoq and Dave Thompson will be among the lucky participants. Have a blast out there and catch some fish for a cure.
|
|
Mixed Bag Designs Fundraiser
An innovative, affordable and profitable fundraiser!
MixedBagDesigns’ reusable bags were introduced in 2008, yet have already made thousands of dollars for clubs, team and schools across the nation. Offering a unique and fresh approach to fundraising, these bags are bold, adorable, affordable and green.
GOOD for the planet – GOOD for the community – GOOD for you!
Saving the Earth...One Bag at a Time!
If interested in conducting this fundraiser, please contact:
Mixedbagdesigns@sbcglobal.net
www.mixedbagdesigns.com
818-566-8733
813-857-8169c
Saving the Earth...One Bag at a Time!
If interested in conducting this fundraiser, please contact:
Mixedbagdesigns@sbcglobal.net
www.mixedbagdesigns.com
818-566-8733
813-857-8169c
Get materials from IRSF’s website and post them around your community. Or get a media kit from IRSF and call your local media and get them to do a story on Rett syndrome. And at the very least, educate yourself. Visit our site and see everything IRSF has to offer.
Oprah Speak for Silent Angels Campaign
On behalf of all those affected by Rett syndrome, IRSF would like to express their gratitude to Lora Barrick-Ramirez for her incredible efforts in spearheading the Oprah Speak for Silent Angels Campaign (OSSA). IRSF has pledged to assist with this initiative, in anyway they can, to ensure all is done to allow Oprah Winfrey to hear our plea.Lora’s daughter, Brenna (age 14), was diagnosed with Rett syndrome less than one year ago. Brenna had been diagnosed with Cerebral Palsy for quite some time, but Lora’s motherly instincts told her it was not right; that she did not have CP. After pushing for additional testing, a positive MECP2 result was received in June of 2009. In this short time of being in the “Rett World,” Lora has become determined to spread awareness so that all families affected by Rett syndrome no longer have to explain what it is and that it is as familiar to the world as Cancer or Autism. The hope is that with awareness and knowledge will come support and with support will come a cure.
A few successes to date:
- In just a few short weeks, the OSSA Facebook page has close to 1,000 members
- A request for letters from families was put out and to date close to 5,000 letters have been collected
- A Rett awareness video is being created; close to 300 pictures have been submitted
- Ayme Sanchez, singer/song writer, has agreed to share her Rett syndrome song, making it available on ITUNES for download with all proceeds going to IRSF
- Jean Marc and France Genereux, choreographers for the So You Think You Can Dance television show, have offered their support to OSSA; they will tell their story in the video
- Lora will attend the Houston, TX Strollathon on October 31st as well as the Clint and Kevin Black IRSF benefit concert on November 1st; letters will be collected at these events
- A second IRSF Road Scholar truck is being unveiled in Texas and will deliver the letters to Oprah, in Chicago, in the near future!
Looking ahead:
- Timeline for OSSA campaign/execution is being created
- School Awareness Campaign is underway to assist with the ask to Oprah
- The IRSF staff and Board of Directors, as well as Kevin Black and his manager, have pledged to work hand in hand with Lora
To join this effort, please contact Lora Barrick-Ramirez at lora_barrick@yahoo.com or Jennifer Endres at jendres@rettsyndrome.org.
Stay tuned for more details…there is a whole team working on this campaign…the ideas and contacts are amazing!
Governor Proclamations
October is Rett Syndrome Awareness Month in the USA, and it is an exciting time for fundraising and gatherings for IRSF families. Work has already begun. The newest addition to this work and excitement is IRSF’s Grandparents Network. A goal of the Advocacy and Awareness Committee of IRSF’s Family Advisory Board is to increase the number of states whose governors declare October to be Rett Syndrome Awareness Month. Some in the Grandparents’ Network, along with Regional Reps and other IRSF members, are making heroic efforts to obtain the proclamations, and some are already in hand. For a group that has been only recently established within IRSF, the Grandparents’ Network has proven itself to be an energetic and blessed addition to the cause of improving the lives of those with Rett Syndrome.- Arkansas State Proclamation - Obtained by Jan Townsley, mother of Crystal (29)
- Illinois State Proclamation - Obtained by Marcia Adamski, Illinois Regional Representative (PDF Coming Soon)
- Indiana State Proclamation - Obtained by Susan Dockter, mother of Sarah Beth/ RTT (27)
- Florida Letter of Recognition - Obtained by Pat and Larry Calderazzi, grandparents of Charlotte/RTT (5)
- Kentucky State Proclamation - Obtained by Jess Steventon, Kentucky/Tennessee Regional Representative
- Pennsylvania State Proclamation - Obtained by Donna Wright, grandmother of Naomi/rtt, age 6 and Grandparent Representative - Mid Atlantic Region
- Mississippi State Proclamation - Obtained by Diane Lee, Mississippi Regional Representative and Grandparent of Mary Claire Lee/ RTT (9)
- Tennessee State Proclamation - Obtained by Jess Steventon, Kentucky/Tennessee Regional Representative
- Texas State Proclamation - Obtained by Gay Horelica, Administrative Assistant, Blue Bird Circle Rett Center, Baylor College Of Medicine, Houston, TX
- West Virginia State Proclamation - Obtained by Donna Wright, Grandparent of Naomi/ RTT (6)
EDUCATE YOURSELF – IRSF Family Conference
Announcing 26th Annual Conference Location
"Ain’t No Mountain High Enough"Cheyenne Mountain Resort
Colorado Springs, CO
Memorial Day Weekend
May 28-31, 2010
Mark your calendars – make your plan!
Who: Every person touched by Rett syndrome - parents, caregivers, professionals.
Why: Invest in yourself – one of the best things you can do for the child or adult in your life with RTT is to educate yourself about the syndrome and the pathways to treatments and a cure.
What: Knowledgeable, respected Rett experts brought together under one roof, for one weekend, dozens of unique sessions – all for you! Unparalleled sessions on research progress, communication, education, life planning issues, medical care, fundraising how-to workshops, marriage/family strengthening workshops, exhibitors and hands-on demos. And the most priceless gift of all: building community, friendship and learning from each other.
Registration will open online January 2010.
Conference Financial Planning Tip:
- Some company Flexible Spending Accounts (FSAs) will reimburse for registration fees, and possibly travel expenses, for education conferences on a diagnosed medical condition with a doctor’s prescription. Most 2010 Benefits and FSA enrollment periods open soon – see if you can take advantage of this opportunity by calling your company’s benefits administration department today!
- Some support agencies understand the life-changing importance of educating parents and caregivers about their child’s diagnosis. Contact your child’s case manager or social worker to ask what expenses could possibly be covered: registration fees, travel, session recordings, or additional respite hours.
- Contact local service organizations such as Lion’s Club or Kiwanis International for their sponsorship or support.
IRSF Family Advisory Board - APPLY NOW!
We encourage interested family members to apply for the IRSF Family Advisory Board by November 14, 2009Make a difference for all families touched by Rett syndrome! The IRSF Family Advisory Board is comprised of 15 active, passionate members who bring personal and professional talents and skills to the table to help advise IRSF on Family Support programs and services. We seek family members (mothers, fathers, grandparents, aunts, uncles, adult siblings, etc) who especially have expertise within the following areas:
- An individual with RTT: young child, school-age child, teen, young adult, older woman, or an individual with RTT who has passed away
- Family make-up: Married, single, divorced, remarried, or adopted child
- Therapies: especially OT, PT, Speech/Communication, Nutrition, Marital/Family
- Medical
- Residential Placement
- Special needs law
- Support services
- Advocacy
- Public relations, media reporting
- Fundraising
- Programs/services/materials development and copywriting
Click here for more details and to download an application Consider - then apply - deadline is November 14, 2009
SHARE YOUR PICTURES WITH US!
We would love to see any pictures you have of your girls, your events or anything you think we could use for our website or future Angel Gallery! Just email them to Lhayden@rettsyndrome.org or mail them to the office attn: Lisa Hayden (address below). Make sure to request a picture authorization form first.DO YOU KNOW YOUR REGIONAL REPRESENTATIVE?
IRSF has an entire team of individuals out there who wish to support you in anyway you need. Whether you want to take part in a family gathering or fundraiser, wish to meet other families, just want to talk, or have questions about programs and services in your area – your Regional Rep is there for you!Please contact your Rep today to be sure you are on his/her list of families and to learn what is going on in your state/region. Please contact Jennifer Endres if you have trouble connecting with your Rep.
*Please contact your Regional Rep to give your current contact information if you have had any changes recently.
- September 26, 2009: Chandler, AZ | 5th Annual AZ Golf Tournament
- September 26, 2009: Wrightsville Beach, NC | 3rd Annual Wrightsville Beach Strollathon
- September 26, 2009: Goodlettsville, TN | TN - KY Family Picnic/Kick-off
- September 26, 2009: Portland, OR | Portland Strollathon
- September 27, 2009: Bronx, NY | Friends Of Rett Family Gathering
- September 27, 2009: Wheaton, MD | Family Picnic - VA/MD/DC
- September 29, 2009: Powell, OH | Silpada IRSF Fundraiser
- October 2, 2009: Portland, CT | 12th Annual CT Golf Tournament
- October 4-5, 2009: Oakland, CA | Natural History Research Study - Oakland
- October 4, 2009: Wilmington, DE | Delaware Run/Walk For Rett
- October 4, 2009: Lincroft, NJ | New Jersey Strollathon
- October 10, 2009: Sowney, CA | Southern California Family Picnic
- October 10, 2009: North Manchester, IN | Indiana Family Picnic
- October 11, 2009: Chicago, IL | Miles For Mary Claire
- October 11, 2009: Fort Lee, NJ | NY/CT/NJ Tri-state Strollathon
- October 13, 2009: Houston, TX | Texas Children's Hospital Awareness Day
- October 17, 2009: Ridgeland, MS | Miles For Mary Claire
- October 17, 2009: Fairfax, VA | 4th Annual Fairfax Strollathon
- October 17, 2009: Chico CA | 1st Annual Chico CA Strollathon
- October 17, 2009: Irving, TX | 3rd Annual Forever Angels Pageant
- October 17, 2009: Idaho Falls, ID | Write And Raffle For Rett
- October 22, 2009: Boston, MA | 9th Annual Boston Festival Of Food & Wine
- October 23, 2009: San Diego, CA | 1st Annual Rett Monster Bash
- October 24, 2009: Harrisburg, PA | The Annual Monster Bash - PA
- October 31, 2009: Petal, MS | Miles For Mary Claire
- October 31, 2009: Houston, TX | 1st Annual Houston Strollathon
-
“Nothing great was ever achieved without enthusiasm.”
~ Ralph Waldo Emerson
[SUBSCRIPTIONS]
Starting October 31, 2009 IRSF and the Black Family ask for your support of the “Spending Time Ending Rett II” event taking place in The Woodlands, TX. The weekend will begin on Saturday 10/31 with the 1st Annual Houston Strollathon at Rob Fleming Park in The Woodlands. It includes a costume contest (it is Halloween, of course) and concludes with a concert by "Rett Supporter and Country Singer," Kevin Black. Grab your friends, family and neighbors and join us for a fun-filled day of fundraising, spreading awareness and strolling our way to a cure! To obtain your Strollathon materials and to help us Kick-Off this fantastic weekend, please join us on September 20th, 2009 at 1:30PM at Dosey Doe in The Woodlands. All Rett families are invited! If you cannot make it to the Kick-Off please email Kenna Seiler (Stroll Chair) to have your Strollathon materials sent to you – kenna@hope-causey.com. The Strollathon is a family fun event – please join us as we bring families, neighbors, business associates and friends from all over together! Then on Sunday 11/1 Clint Black will be performing at Dosey Doe in The Woodlands once again this year. Please contact Dosey Doe at 281-367-3774 or Dave Clements at 713-410-6076 for ticket information. On Monday 11/2 join us on the Bentwater Golf Course in Montgomery, TX for the 6th Annual ‘Tee It Up For Rett Syndrome’ Golf tournament! To purchase your spot on the golf course CLICK HERE or contact Dave Clements at david-clements@msn.com or at 713-410-6076.
|
 “We invite you, your friends and family and all Rett families to spend this heartfelt weekend with us… your help is our hope…we are asking for your support.”
|