Integration Update #6

January 6, 2008

Happy New Year to all and our best wishes for a healthy and prosperous 2008!


Research:

  1. This past week a sub-committee of the board of directors along with two of our highly respected research advisors participated in a conference call with staff from the search firm of Isaacson Miller. The purpose of the call was to review the applications of eight individuals interested in the position of IRSF’s Scientific Director. We are thrilled to report that all candidates were highly respected and well qualified. Further discussions will take place during the week ahead and we look forward to announcing a Scientific Director as soon as possible.

  2. Our congratulations to Adrian Bird, Ph.D. for the honor he recently received from WIRED magazine recognizing his research on Rett syndrome as one of the top ten most significant scientific achievements of 2007! Dr. Bird’s research provided proof of reversibility of RTT symptoms in genetically altered laboratory mice and has ignited the field while offering hope to all.

Family Support:

  1. Family Advisory Board
    New beginnings are here for 2008! The IRSF Family Advisory Board is formed and we will introduce members to you next week. This board will serve as your voice to the Foundation, advising us on support programs and services that will benefit you most. I know they all look forward to knowing you!

  2. 24th Annual Conference – "Together We Are Better"
    The 24th annual conference over Memorial Day Weekend, May 23 - 26, 2008 will be held at the Fairmont Hotel in Chicago, IL. This wonderful, fast-paced get-away weekend filled with opportunities to learn from expert professionals in the field of Rett syndrome, rejuvenate, and network with others is the only national conference of its kind. This is a learning opportunity for your child’s physicians, therapists and educators as well. Full-conference and single-day registration will open late January 2008.

    We are looking for event sponsors to help keep conference registration fees as low as possible. If you, a friend, or professional contact are interested in making a financial commitment or a donation of services or materials, please contact the office at 1.800.818.RETT for more information, and a donor recognition/benefits form.

  3. Regional Representative Program
    IRSF strives to have at least one Regional Representative appointed in each state, and one bilingual representative per U.S. time zone to support our non-English speaking families. Regional Representatives have a personal connection to Rett syndrome and act as a local resource for families, offering support and information. Read more about this program and see the list of current Regional Representatives by clicking here. Helping others in their time of need is incredibly rewarding. If you are interested in applying for a Regional Representative position, contact Jennifer Endres at jendres@rsrf.org

Integration Update #5

December 23, 2007

Research:

  1. This past week the International Rett Syndrome Foundation announced the availability of research grants and post-doctoral fellowships for the treatment and cure of Rett syndrome. An email alert was sent to researchers along with a physical mailing informing them that full applications cannot be submitted without prior review and approval of a Letter of Intent. Letters of Intent must be submitted by Feb 1, 2008. The letters will be reviewed by our Scientific Advisory Board and applicants will be notified of IRSF's decision by March 15, 2008. Final grant applications are due May 3, 2008. Applications are available online at www.rettsyndrome.org and www.rsrf.org.

  2. The search firm of Isaacson Miller who is assisting with our search for a Scientific Director has received applications from a number of qualified individuals and will be holding an initial review conference call with the search committee on January 3rd. Applications for the position are still welcome and the search committee looks forward to providing an update after the January 3rd call.

  3. The 9th Annual Rett Syndrome Research Symposium will take place on June 23-25, 2008 at the Eaglewood Resort outside of Chicago, IL. The symposium will be preceded by a Clinical Outcomes mini-symposium on June 23, 2008.

Family Support:

  1. Applications to serve on the Family Advisory Board (FAB) have been received and reviewed by a subset of board members and staff. Candidates are currently be contacted regarding the status of their application and a formal announcement introducing the FAB, their goals and objectives will be sent after the holidays. Thank you to all applicants for your interest in serving the Rett community and for giving of your time and talents.

  2. The IRSF Partner Program is still scheduled to launch in January 2008. The launch will coincide with the website launch as the website will provide means for online registration in the Partnership Program.

  3. As previously stated the 24th annual Family Conference will take place over Memorial Day weekend (May 23-26) at the Fairmont Hotel in downtown Chicago. The family support staff is holding regular conference calls with the Conference Committee to develop the conference agenda, guest speakers, topics, etc… Details will follow as these plans are finalized. Please note that full-conference and single-day registration will open in January.

Communications:

  1. The development of the new IRSF website is progressing as planned and a January launch is still on target. The wireframe for the site is complete, content from www.rettsydnrome.org and www.rsrf.org is being migrated and new functionality is being added which includes message boards, streaming video, e-commerce, partnership and event registration, downloads of the most frequently requested materials and how-to manuals for stroll-a-thons, etc…

  2. Our quarterly print newsletter will launch in the first quarter of 2008 and our email newsletter, IRSFlash, will continue to provide updates for every element of our mission…research, family support and advocacy.

  3. Over the next week or so you will receive our first IRSF appeal letter which offers a glimpse of our new logo and brand identity. Shortly after you will receive a direct mail piece discussing the new identity how we will utilize it in all our communications, both printed and electronic.

  4. As stated above, communication has been sent to the research community informing them of the availability of research grants and post-doctoral fellowships.

Fundraising:


My personal thanks to everyone who has hosted, participated in or plans to host a fundraising event in the year to come. Your efforts are extraordinary and greatly appreciated. My congratulations to the chairs and volunteers who organized the recently held 7th Annual Festival of Food & Wine in Boston, MA. Over six hundred guests attended this event and raised over $560,000 to support the efforts of IRSF. Our thanks and gratitude to all involved.

Wishing everyone a very happy and healthy holiday season!

Best Wishes,
Chuck


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Integration Update #4

November 8, 2007

Research:

  1. The well respected search firm of Isaacson Miller is engaged in assisting our efforts to hire the most qualified and capable candidate for the important job of IRSF Scientific Director. The firm is interviewing IRSF Board members, interim Scientific Advisory Board members and staff to ensure they have a clear picture of the ideal candidate for the job. Simultaneously, they are gathering a list of qualified candidates to pursue.

  2. Our call for grants cycle will not be disrupted during this search, and will be handled by the interim Scientific Advisory Board and staff.

  3. Planning for the Annual Scientific Symposium in Chicago this June is underway as scheduled.

Family Support:

  1. November 12 is the postmark deadline for applications to serve on the Family Advisory Board. Many applications have been received to date. A subset of board members and staff look forward to identifying and contacting selected members before the end of the year so we can kickoff 2008 with the announcement of term appointments.

  2. The IRSF Partner Program will launch beginning January 2008, giving everyone the opportunity to enroll in the benefit level of your choice and be an important part of the International Rett Syndrome Foundation.

  3. Over 6,000 packets have been mailed as requested for Phantom Tea! This is an ongoing event throughout the year, not just the month of October, and we appreciate everyone’s continued participation.

  4. With less than two months remaining in the calendar year, check our events listing for an event in your area. If you are interested in hosting an event now or anytime in the future please contact our offices and we will assist however possible. Your efforts allow IRSF to fund critical research and provide the family support services desired.

  5. A contract was signed with the beautiful Fairmont Hotel in downtown Chicago to host our 24th annual conference Memorial Day Weekend, May 23 – 26, 2008. A survey is posted on the websites to gather input in our planning efforts for this premier event. We are seeking sponsorships and exhibitors/vendors to keep conference fees as low as possible. The conference planning committee is meeting regularly. Speakers are being scheduled. Full-conference and single-day registration will open in January.

Technology:

  1. As communicated, work on the new IRSF website is progressing rapidly. The underpinnings of the site are in final stages of development. Content providers are reviewing and editing hundreds of content pages for migration – it is truly amazing how much information we truly DO know, understand and need to be make publicly available about Rett syndrome.

  2. The database software suite that will manage our CRM, financials and reporting needs is being implemented. Staff will be trained on data input/output and reporting capabilities in the coming weeks. Full launch will be beginning of 2008.

Communications:

  1. The first IRSF face-to-face Board Meeting took place Nov 1-2 in Chicago. The Board of Trustees came together to strengthen their shared commitment to the IRSF 3-pronged mission of Research, Family Support, and Advocacy/Awareness. A “120 Day Review” of integration covering people, operations, processes and issues was conducted. Board committees were formed.


With Best Wishes,
Chuck Curley
Executive Director

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Integration Update #3

October 24 , 2007

Research:

  1. The search committee for the Scientific Director position interviewed a number of executive level search firms and after additional consultation with key scientific advisors has retained the firm of Isaacson Miller to assist our efforts to hire the most qualified and capable candidate for the job. Isaacson Miller is an extremely well respected search firm with a great deal of experience assisting foundations in need of exceptional leaders for such an important role as Scientific Director.

  2. A formal letter is being sent from this office to the members of the IRSA and RSRF Scientific Advisory Boards informing them of the decision to hire Isaacson Miller, requesting the names of any candidates they feel are qualified for this position, etc… The letter also confirms we will hold the Annual Scientific Symposium in Chicago this June as scheduled. I am working with a subset of the board as well as key advisors to plan and implement the upcoming symposium.

  3. Once the new Scientific Director is hired that individual will work with the interim SAB and acting SAB chairman to establish the new IRSF SAB.

Family Support:

  1. As the September 27th eNewsletter highlighted, fundraising events of all shapes and sizes are taking place all over the country! The Phantom Tea is underway and will continue as an ongoing event throughout the year, not just the month of October.

  2. Over 50 fundraising events have been held since this Spring to benefit the ongoing efforts of IRSF! We are deeply grateful to all those organizers and volunteers who make these events possible. Your efforts allow IRSF to fund critical research and provide the family support services desired.

  3. With just over two months remaining in the calendar year our event schedule is still full. Please check our events listing for an event in your area. If you are interested in hosting an event now or anytime in the future please contact our offices and we will assist however possible.

Technology:

  1. Work on the new IRSF website is underway and progressing rapidly. Our staff is working with our web development vendor on a daily basis and has already achieved the following:

    Wire Frame Design (Progress Outline)
    • Development Server Setup (Hosting and DNS configured)
    • Database and Web Content Management Systems installed
    • Database Configuration in process
    • Page Template Design near completion

    We have a secure development server set up and have begun converting the site map into an actual database structure. Page templates have been created to house the wire frame navigation, a click-through skeleton of the web site. Simultaneous database creation allows us to migrate content to the new site rapidly, once the wire frame has been approved by project managers. Content providers have been identified and are working on their deliverables.

Communications:

  1. Brand identity and logo design are progressing and nearing completion. Our illustrator is working with our branding firm to complete the look and feel of all printed materials as well as how the new logo will be incorporated into electronic communications. We hope to roll out the new identity and logo very soon.

  2. IRSF Board Meeting – the first face-to-face board meeting is taking place on Nov 1-2 in Chicago. A number of those attending the meeting will also visit the Natural History Study clinic at Rush Presbyterian Hospital (Chicago, IL) during the weekend of November 3rd and 4th.


With Best Wishes,
Chuck Curley
Executive Director

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Integration Update #2

September 15, 2007

Research:

  1. Search committee for Scientific Director finalized, additional names from scientific advisors collected, and job description completed. Process for accepting applications, reviewing candidates and posting job opening finalized.

Family Support:

  1. First Regional Representative conference call held was held this past Monday. Staff present on the call included members of our Family Support team, Chairwoman Kathryn Kissam and myself. The call was an excellent opportunity for informal introductions, a review of goals and objectives for Family Support and a general Q & A.

  2. Congratulations to a number of families hosting fundraising events and generating outstanding press coverage. A wonderful PSA was created and aired on NBC affiliate WSLS-TV to promote the Third Annual Roanoke Strollathon which is taking place this Sunday, September 16th. Maggie Wurm and daughter Madasyn made a live appearance on ABC affiliate WTNH-TV’s news at noon to promote the First Annual Rolln’ with Rett Angels Strollathon which is also taking place this weekend.

  3. Our thanks to everyone hosting a fundraising event to support our mission. Your support is critical to our success.

Technology:

  1. Website development contract was signed yesterday with our first site development meeting scheduled for Tuesday the 18th. Project managers have been assigned and we hope to launch the new IRSF site within 120 days!

  2. Database vendor has been identified and final selection of software suite being evaluated. An evaluation team has been established and is currently reviewing the customer relationship management (CRM) portion of the suite along with the financial reporting and tracking piece. Final decision should be made within 10 days.

Communications:

  1. The previously announced press release to detail the most recent grant awards has been held for a few days to ensure all the researchers have received their formal notice from IRSF prior to issuing the public release. Expect to see this press release in the week ahead followed by the Family Support update.


Wishing everyone a great weekend.

Best Wishes,
Chuck Curley
Executive Director

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Integration Update #1

September 9, 2007

Research:

  1. On August 29th IRSF announced a record $2.785 million in research commitments for 2007! Details of the newly awarded research grants to be provided via email press release in the week ahead.

  2. We are currently engaged in discussions with our scientific advisors to finalize the IRSF Scientific Advisory Board and identify the ideal candidate for Scientific Director. As previously stated it is our goal to attract a credentialed scientist to lead our bio-medical research portfolio.

Family Support:

  1. Mid July the family support team along with three members of the executive committee of the board of directors and myself held a “Family Support Retreat” to discuss roles, responsibilities and define the goals of a comprehensive family support program.

  2. Just last week our Direct of Family Support, Paige Nues, announced the guidelines for the soon to be established Family Advisory Board. The release included a link to download an application form for anyone interested in serving in this capacity.

  3. The dates for the 2008 Family Conference (Memorial Day weekend) were confirmed and announced on August 8th via email press release. Final site visits were conducted just last week and we expect to announce the local very soon.

  4. Details of the IRSF Partnership Program were announced on August 8th with more information to follow in the month ahead.

  5. The regional rep program will continue with the goal to expand the program to include a regional rep in every state and provide bilingual reps on a regional basis. An IRSF Regional Rep conference call is taking place on Sept 10th.

  6. Information about the 2007 Phantom Tea was finalized and distributed this past week. We are looking forward to another successful tea.

Technology:

  1. Website development proposals were requested and reviewed by a sub-committee of the board with expertise in this area. Just last week a web development firm was chosen and work on the new IRSF will begin with an expected launch date in 120 days.

  2. Database software firms/programs are being evaluated as we strive to provide the most efficient means of providing all staff with up-to-the-date contact information about the families and individuals we serve. Once the vendor is finalized we will begin the process of migrating data from both organization’s prior systems, eliminating duplication, and validating contact information. This is a very time intensive proposition and we expect to complete the database integration within 120 days.

Communications:

  1. As previously stated, we have enlisted the pro-bono services of three outstanding marketing firms with prior history working with Rett syndrome to help design a new logo and brand identity for IRSF. Work on this project, as well as many of those listed above, could not begin until the 2/3rd IRSA membership vote confirmed the approval of the merger. Close to 100 logos have been reviewed by a sub-committee and the group has narrowed the list to a handful of excellent options. Work on this project is ongoing and reviewed weekly.

  2. Once the brand identity has been established we will publish the first of our quarterly print newsletters keeping you up-to-date with all that has been going on in the Rett syndrome community.

  3. To better keep everyone informed this “Integration Update” webpage has been created and will be updated on a weekly basis. Through this page you will hear about recent accomplishments, upcoming plans, etc… This page will be updated by myself, staff members and members of the board of directors.


This update is designed to keep you informed of major developments and certainly not inclusive of all that has transpired over the last 70+ days. I hope you find it to be helpful and a useful way to keep up-to-date with IRSF.

Thank you again for your continued support, patience and concern.

Best Wishes,
Chuck Curley
Executive Director

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