Submitted by: Ellen Burns–Vice President
Research costs a lot of money. The Deater Foundation was established to help pay for research into the cause and cure of the Deater disease, HSN 1. Muscular Dystrophy Association has generously supported research for neuromuscular diseases including HSN 1. Dr. Khemissa Bejaoui, the primary researcher at the Day Lab for HSN 1, has spent many long hours researching for and writing for grants of money to support her work. Recently, she has submitted a grant request for a substantial amount to the National Institutes of Health. Please keep these efforts in your prayers.
Research costs include not just the salary of the researcher, statisticians, and secretarial support, but also the lights, heat, and upkeep of the building; the purchase, updates and maintenance of the huge and costly computer run machinery; the phone bills, paper, and paper clips. Since 1992, the Deater Foundation has provided anywhere from $8000 to $24,000 in a year to the Day Lab. Although the Deater Foundation, by itself, does not come close to providing enough funds to research HSN 1, it serves as an example to other potential donors and “primes the pump” into the well of research dollars.
Now that the gene for HSN 1 has been identified, there will be increased interest in the scientific and medical communities for treatment of the disease.
This is perhaps the most important time to consider giving to the Foundation! The ultimate goal has always been to treat the disease and to prevent it in future generations. As painful as this disease has been for individuals, I have been told by many that the worst pain is seeing your children develop the disease.
Now that the gene has been identified, the researchers plan to make a working model of the disease, in a cell and in a mouse. Then research can be done to determine what the gene defect does in the body to create the disease. At the same time, treatments can be tried at the cellular level. All of this must be done in preparation for treatment of the disease in humans. This is an expensive process.
Thanks to the many family and friends who have supported the Deater Foundation financially and with their prayers, we now know the gene. It has been inspiring to hear how families and individuals have been creative in finding ways to set money aside for the Foundation. Keep your penny jars, or quarter jugs earmarked for the Deater Foundation. Request a contribution instead of a birthday or Christmas present. Encourage your children to think of others with their pennies and their prayers. When you receive solicitations in the mail or at your door for all of those other worthy charities, slip a dollar instead into an envelope for the Deater Foundation. A donation will provide future hope for many of your kin as the researchers develop treatment for this disease.
At the conclusion of the article identifying the gene for HSN 1, just before Khemissa’s name, is paragraph headed Acknowledgments. It begins, “We thank G. Nicholson for sharing prepublication results. This work was supported by the Deater Foundation, Inc.,…”. This is to me an affirmation of the work of the generations before us. It is a tribute to those who suffered and sought knowledge about this disease. It is a sign of hope and trust in the Lord and in family. We Deaters, with little material wealth but rich with compassion and love for one another, have made a difference in the lives of so many people around the world! We have much for which to be thankful!