ÒFingerprints look like ripples
because time keeps dropping
another stone into our palmÓ
Bill Knott
We say Òthank youÓ to our loyal supporters. In the final paragraph of our 2004 letter to you we asked that you Òhelp us reach $1 million in 2005.Ó We received an overwhelming response and reached our goal before January 1, 2005! So this year we begin our appeal with heartfelt thanks to all who gave so generously last year to help us move closer to reaching our ambitious goals.
Here is an overview of our work during our fourth anniversary year of CameronÕs and HaydenÕs deaths.
Mission Part I: To decrease the incidence of chronic and complex childhood diseases
The upcoming year represents a culmination as well as a new beginning for the Lord FoundationÕs medical research initiative. Dr. Fannie Chen at Mount Sinai hospital in NY and the first recipient of our research grant, has made a series of dramatic discoveries as to the efficacy of small molecules in the treatment and testing of lysosomal storage diseases such as Tay-Sachs. Dr. Chen will receive the final payment of her 3-year, $150,000 grant in January 2006.
Going forward, we have entered into a partnership with the research initiative started by National Tay-Sachs and Allied Diseases (NTSAD) in 2002. By joining forces with NTSAD and the half dozen foundations that comprise this initiative, we will be able to increase the impact of our funding dollars. Grant making as part of the NTSAD Initiative will be carefully coordinated by the Lord Foundation under the guidance of a preeminent panel of scientists. Our grant will be one of 4-5 made annually to support a wide range of promising research topics. The Lord Foundation will continue to take part in NTSADÕs yearly Research Summit. This exciting forum allows scientists to present new findings to each other and to biomedical companies with the goal of accelerating innovation in treatment. The 2006 Research Summit will be in Washington, D.C. in April and will be co-hosted by NTSAD and researchers for the National Institutes of Health (NIH). The Lord Foundation will be there.
Finally, as part of the NTSAD Research Initiative, we will work to direct national and international funding resources to partner with such organizations as the NIH. This will help steer large, long-term research grants to those making strides in the testing and treatment of allied diseases such as Tay-Sachs so that one day such diseases might no longer be fatal.
Mission Part II: To increase the quality of emotional, spiritual and medical care for families facing these diseases
In support of Part II of our mission, our funds established the CarePoints program. Over the past three years, CarePoints hosted several annual conferences to highlight issues in parent-professional communication and to illustrate effective communication around critical care points such as diagnosis, crisis and the transition to palliative care. CarePoints also launched a robust web-based Resource Center which has gotten strong endorsement and feedback from the parent and social work communities. If you know any parents caring for medically complex children or coping with grief-related issues, we encourage you to point them to the Resource Center at www.carepoints.org. The Lord Foundation will continue to fund the management of this website to keep the resources current, accurate and invaluable.
The CarePoints mission and methods resonates with families and medical professionals, including medical students. The narrative method, whereby parents and professionals review and tell their stories together, has proven particularly powerful and effective in communicating both the challenges and opportunities in parent-professional partnerships. To capture this method and reach a broader national audience, CarePoints used its 2005 Lord Foundation grant to launch a teaching video project for medical professionals. The goal of the project was to produce a film using personal narrative to present the importance of parent-professional communication at critical junctures in the care of a medically complex child. The piece also covers the difficult topics of end-of-life and palliative care. This extraordinary film was created by Emmy-award winning producer Betsy Arledge. When it has been fully packaged, it is our hope to send it to our supporters.
With an eye towards national distribution of the film and a reach into the pediatric community, the Lord Foundation and the CarePoints advisory board are now developing a partnership with the American Academy of Pediatrics. We have recently submitted a Request for Proposal to the AAP to package, market and distribute the CarePoints film. The AAP has expressed keen interest in our agenda and in using the film as a tool. Excited about working with this prestigious national organization, we are confident that by the end of this year, the Lord Foundation will be funding a new initiative within the AAP.
4th Annual $10,000 for 10K
On September 11, the 4th Annual Cameron and Hayden Lord Foundation 10K Walk/Run was again hosted by Nina and John Englander near their home in Lexington, MA. Close to 100 people joined us for what is one of the more delightful days of our year! Once again, the event raised over $10,000. In addition to covering the FoundationÕs minimal overhead, this money will directly fund the Lord FoundationÕs support of NTSADÕs parent conference which takes place every April and brings together families affected by Tay-Sachs and other allied diseases. During Cameron and HaydenÕs lives, this conference was invaluable to us and we are delighted to be able to give back to new parents.
Congratulations!
We began this 2005 Foundation letter with a message of thanks and gratitude. We end it now with congratulations to you for your generosity in bringing us to our present funding status and for enabling strong partnerships with organizations that will allow our funding to work harder to achieve our mission. Please now help us continue the important work we do to help others in honor of CameronÕs and HaydenÕs brief but powerful lives.