A Cure for Bassen Kornzweig Foundation

This is who we are

We want to thank you for coming to our site. We hope that the information that we provide is what you were looking for. We started this site because our son Jamil was diagnosised with several rare diseases. Because he is so complicated the doctors have been unwilling to treat him for several of the diseases because there is just not enough research into them. Without treatment though our son will die by the age of 5, but our dream is that maybe we can't save Jamil but we can help to save someone else's son or daughter from the suffering that he goes through.

The most serious rare disease right now is Bassen Kornzweig Syndrome. Although it is known by many names, it is a disease that is starving the body of necessary nutrients. The body is unable to absorb things like Vitamin A, D, E, and K. Without these vitamins your body will shut down. These children end up blind, vegetables, and die. Please help us in stopping this from killing our children.

Although we focus mainly on Bassen Kornzweig Syndrome, we also focus on other diseases and disorders. We work with SPinal Bifida, Sensory Intergration Dysfunction, Ventrical Septical Defects, Failure to Thrive, Developmental Delays, Genetic Disorders, and anything that is affecting the quality of life for children.

Please know that we are here to help support you and your family. We are not doctors nor do we claim to be but we are parents who are willing to do anything to save our son and yours. Thank you for visiting.

Our Mission

Hope for A Cure for Bassen Kornzweig Foundation is dedicated to education, research and support for Bassen Kornzweig Syndrome. We are dedicated to the diagnosis, treatment, and cure of Bassen Kornzweig Syndrome. We are dedicated to providing support to families and loved one of this syndrome.

We are dedicated to helping families with children who are affected by any rare disease, gentic disorder, or medical condition that is hindering them from having a long full life.

Our Goals

Our goals are to create a support group in every city so that parents and family have somewhere to get support from. We hope to bring awareness of these terrible things to the medical community who have hardly heard of these diseases. We hope to help families with counseling, food, clothing, shelter, toys, etc. that will make life for your loved one better. We hope to provide yearly conferrences so that all the families who have this disease can come together learn more and not be alone. We hope to help fund research that will hopefully lead to cures for these things. We hope to provide a way for families and loved ones to feel as though they have help when no one else will help them.

Our goals and mission are carried out through community knowledge, family conferences, annual symposiums, fund raisers, support groups, etc.

Clinical Trials

Lipoprotein Metabolism in Normal Volunteers and Patients With High Levels of Lipoproteins

Purpose

Researchers plan to study the fat-rich particles, called lipoproteins, which circulate in the blood. This study is designed to improve understanding of normal, as well as abnormal, lipoprotein metabolism and the role it plays in the development of hardening of the arteries (atherosclerosis).

Patients participating in this study will receive injections of lipoproteins or apolipoproteins (the protein component of lipoproteins) that have been isolated and purified. These lipoproteins will be labeled with small amounts of radioactive material and sterilized before they are injected into the patient.

Patients participating in the study will be required to have blood samples taken, and provide urine samples throughout the course of the study. In addition, patient will be required to follow a specially formulated diet. Patients will be weighed throughout the course of the study.

Contacts and Locations

Please refer to this study by its ClinicalTrials.gov identifier: NCT00001154

Contact: Patient Recruitment and Public Liaison Office [phone] email them at [email protected]

Locations

United States, Maryland

National Institutes of Health Clinical Center, 9000 Rockville Pike Recruiting

Bethesda, Maryland, United States, 20892

Read more Here

What You Can Do To Help

There are many ways that you can help. 100% of all donations are tax deductable. You will recieve a reciept for tax purposes, and for your records.

Gifts: Gifts of toys, clothing, medical equipment, vitamins, etc are great gifts. Please contact Baron Hooper for more information on what is needed Here.

Money: Gifts and donations of money are accepted in any amount that you want to give. Payments are accepted through Paypal, Credit cards, Check, Moeny Orders, Cashier Checks, etc. Gift Cards are also accepted. Send all money donation payments through paypal

Fund Raisers: We host several fundraisers a year. Our first one is under way. For every $5 donation you are entered into a drawing to win one of three prizes, a free professionally designed, hosted and maintained website for one year. An IPOD Shuffle, and a MP3 player. Please contact Leigha for tickets Here

Anything that you think will be of benefit. Whether it is your time helping start a support group in your area, as a board member, advice, running children's play groups, helping organize the annual family conferences, annual symposiums, prayers, etc. Anything that will help these children feel as though they are not alone will help. If you have any questions, comments, concerns, want to volunteer, etc please email us Here

Author's Note

Please if your interested in helping us fundraise please email me at [email protected] and I will send the material you can use to sell our products to help find a cure for this terrible deadly disease.