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Resources: Frequently Asked Questions
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I. What We Do
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What does the CNS Foundation do?
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The CNS Foundation raises money to fund high-quality research focused on brain repair and regeneration for children with neurological disorders. The CNS Science Program directly funds laboratory research projects, sponsors innovative science workshops and encourages distinguished scientists to pursue careers in neurological research for childhood brain disorders.
Through our website, eNews, and local Parent Action Committees (PACs), CNS provides families with information, resources, and a community, which empowers them to make informed decisions regarding the care of their special child. |
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Our family needs help paying for therapy for our child. Does CNS provide funding or services for individuals or families?
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No. CNS is a research foundation and does not fund therapies or provide services for any family or individual. For a listing of funding and services resources, visit the U.S. Department of Health and Human Services “Resource Locator”. For information about research and treatment options for specific medical conditions, visit MedlinePlus a service of the U.S. National Library of Medicine and National Institutes of Health.
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How long has CNS been an organization? Who started it?
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In 2000, when Fia and Phill Richmond realized that the medical community had run out of answers for their son Palmer, they collaborated with the best scientists they could find and created CNS to speed new cures and therapies for their son and millions of other children like him.
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How big is the CNS Foundation?
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CNS is a growing organization comprised of individuals with special needs and parents of special needs children, volunteers, friends and caring community members, leading scientific advisors, science researchers and a dedicated staff. It is impossible for us to count the many hundreds of individuals that have helped CNS raise over $2 million toward our mission.
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II. About Therapies and Treatments
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Does CNS provide or recommend therapies or treatments for my child?
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No. CNS is a research foundation and does not provide therapies or services for any family or individual. For information about research and treatment options for specific medical conditions, visit MedlinePlus a service of the U.S. National Library of Medicine and National Institutes of Health.
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I want my child to receive stem cell treatments as soon as possible. Does CNS have any stem cell clinics for children?
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No, CNS is a research foundation and does not have any patient clinics or clinical trials at this time. For a complete listing of the latest clinical trials, visit ClinicalTrials.gov a service of the National Institutes of Health. |
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We are thinking about using alternative treatments for our child. Does CNS have research about or advocate for available alternative therapies?
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CNS does not formally conduct research on, or advocate for any specific alternative health therapies for children. Instead CNS provides families with links to alternative therapies on our Resource Links .
Also, CNS hosts the "project hope daily" (phd) online parent discussion group for ongoing peer support. CNS values parents as true experts in the field of their own child and encourages families to meet each other online in the "phd" or offline in a Parent Action Committee (PAC). CNS does not make any recommendations regarding medical treatments and always encourages families to discuss treatment options with their physician.
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What about the thousands of children that remain undiagnosed?
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Research on brain disorders can be conducted without having a diagnosis. In almost every major advance in medical knowledge, a breakthrough occurs before scientists can understand what causes a disease and how it develops.
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Can you tell me about Mary Schneider and/or cord blood stem cell therapy?
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Yes. For a complete discussion with Mary Schneider regarding umbilical cord blood stem cell therapy, visit our online Community Forum.
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What is the CNS position about stem cell treatment clinics being conducted outside the United States?
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CNS advocates only for scientific research conducted in the United States under the rigorous scrutiny of the FDA.
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III. About the Research We Support
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Is CNS focused on stem cell research?
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CNS funds stem cell research, but that is only part of its research program. Research on how the brain can regenerate and repair itself investigates a range of materials that naturally occur in the body, such as genes and proteins (antibodies, growth factors, hormones); cells and tissues; as well as stem cells.
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Why is stem cell research important?
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According to the nation's leading scientists, stem cells can lead to the production of new healthy brain cells. These could be used to replace or repair damaged cells that cause some of the most serious pediatric brain disorders.
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What if I have ethical objections to some of the research you are doing? |
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CNS Donors can direct their contributions to support only specific projects aligned with their needs and interests. The CNS Scientific Advisory Board is made up of leaders from some of the most prestigious universities and scientific organizations in the country including Harvard Medical School, UCLA School of Medicine, The Burnham Institute, and the National Institutes of Health. All research supported by CNS follows the strict practical and ethical guidelines established by the US FDA.
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Will the research that CNS supports produce cures in my child's lifetime?
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It is impossible to predict the course of research, however CNS is moving as fast as its resources and the science will allow. Since the founders of CNS and many of its supporters have children in need of this research and the resulting treatments, we have an urgent need to make progress in the shortest time possible.
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I’m a college student doing a class project on resources for special needs families. Can you send me pamphlets and other CNS printed materials? |
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Yes. CNS values all student interests and is happy to support class presentations. Whether you are an undergraduate or graduate student looking for information to share as a resource for families or a new venture in medical science, we will promptly mail you pamphlets and email you our handouts (available in English and Spanish) to help you share the information with your teachers and classmates. Whatever your course of study, we hope you can also share information about CNS with special needs families you meet throughout your career. (Thank you!)
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IV. What Can CNS Do For My Family?
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What Can CNS Do For My Family?
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The CNS Family Program gives parents tools, resources and a community of families who are dedicated to giving the best possible care for their special child. Through the website and monthly newsletter, CNS provides parents with updated information on research that benefits children with brain disorders. By knowing what leading doctors, scientists (and parents) are discovering in their research, families are empowered to make informed decisions about the scope of available treatments for their child. CNS gives parents, family members and friends a direct opportunity to influence and fund science that affects their child and to help make brain repair and regeneration possible for not only their own child but millions more who also wait for new cures and therapies!
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How can I meet other parents who have a child with a similar diagnosis and/or with a similar life experience I can relate to? |
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The CNS Family Program staff is dedicated to making sure that families have the opportunity to connect with one another regardless of where they live. The easiest way to meet other like-minded parents is through our members-only online discussion group called “project hope daily”, or “phd”. If you would like to meet other families who share similar life experiences and who live near you, send an email to PAC@cnsfoundation.org and tell us where you live. If you live in a small rural town in the U.S. you may be interested in joining our Small Town PAC to meet others online or via teleconference to brainstorm for solutions specific to the unique challenges of raising a child with special needs far from cities and available resources.
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What is a PAC? |
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A PAC is a Parent Action Committee. A PAC is a parent driven group that shares hope, determination and action throughout the daily challenges of raising a child with special needs. A PAC is like a cross between a parent support group, a Special Education PTA and a community forum. A PAC involves parents to aid in understanding and influencing cutting-edge neuroscience related to their children.
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What is the “project hope daily”? How do I join? |
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The “project hope daily” (aka “phd”) is the CNS members-only online parent discussion group available for parents to share their earned pediatric expertise and give valuable peer support to others. If you are interested in joining the CNS “phd” group, write to PAC@cnsfoundation.org and tell us a little bit about yourself and the special child in your life.
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How can I do fundraising if I can hardly take a shower? |
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Fundraising for CNS is as much about raising hope and awareness in your local community as it is about raising money. Fundraising for CNS should be fun, and match your own lifestyle. All fundraising efforts, however big or small are contributions toward making brain repair possible and giving parents, family members and friends a way to make a positive impact on the future of the special child in their lives. For easy ways that you can incorporate fundraising for CNS into your daily lives, visit Fundraising .
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What exactly are the scientists working on to help my child?
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In layman’s terms, CNS scientists are working on understanding the way the brain works on its own and also how the brain can begin to repair and regenerate itself with the right treatments and techniques. For more about this research click here.
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V. How Can I Get Involved?
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How can I get involved?
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The easiest ways to get involved with CNS are to subscribe as a member, read our monthly eNews(letter), make your contribution to the amazing science being done in the laboratories, and become part of the CNS Family Program on and off-line. You can start or join a PAC PAC@cnsfoundation.org, join the “phd” online parent discussion group, and/or introduce CNS to others who also want to know about the development of brain repair for children.
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Is there a CNS PAC I can join? |
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Yes. Joining a CNS PAC is as easy as sending us an email PAC@cnsfoundation.org with some basic information about your family, and you can also let us know if and how you would like to be involved in the organization. This will allow us to put you in contact with others close by to start building a local PAC in your area, and will automatically give you National and International PAC membership for coordinated days of action throughout the world!
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How can I donate to CNS Foundation?
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You can donate directly online using our secure payment system.
Click to Donate
Only VISA, MasterCard, or American Express credit or debit cards are accepted. These include International cards branded as VISA, MasterCard and American Express.
We CANNOT accept Maestro, Discover or any other brand of card.
Or, you can mail your check to:
CNS Foundation
1223 Wilshire Blvd, #937
Santa Monica, CA 90403
Or, you can call us to discuss your goals for funding the future of brain repair, now.
Telephone: 310-889-8611
Toll FREE 866-267-5580.
Office hours: Weekdays, 9am-5pm Pacific Time.
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VI. About This Website
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How do I sign up for the CNS eNews(letter)?
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Simply enter your email address in the field just below our logo on our Home page. and click the “subscribe” button. Tell us a little, or a lot about yourself, and then submit the form. You will receive an email confirmation and our latest eNews. You can “unsubscribe” at any time by clicking on the links at the bottom of the eNews.
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What does CNS do with my email address and personal information?
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All subscriptions to the CNS eNews or Community Forums are secure and private. CNS will only use the information you provide to communicate with you directly on behalf of CNS. Our message boards contain both public and private forums. Other users cannot access your private information. We do not share our subscriber information with any other individual or organization.
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How do I visit the CNS Community Forums?
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There are two ways to get into our forums:
- Click the “forum” link located in the dark green band at the top of each page.
- Select the “Resources” link at the bottom of the menu to the left of each page.
Feel free to browse our public discussions and open forums.
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How do I post messages within the CNS Community Forums?
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If you wish to post a message or enter a private forum such as “Project Hope Daily”, you will need to register. To register simply complete the required fields and submit the form.
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I am already registered for CNS eNews, am I also registered in the CNS Community Forums?
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No. The CNS eNews is a free subscription-based newsletter that provides thousands of individuals, families, friends and others with a lifeline to the latest news, information and resources they seek for their special needs children.
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If I register in the CNS Community Forums, am I also registered for CNS eNews?
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Yes. The CNS Community Forums provides an online community for you seek specific information, share your experiences, and to learn from the experiences of others. When you register for our Forums we will automatically send you our eNews. We hope the information it provides becomes a catalyst for CNS parents and friends to join together online, and in person, as part of the CNS Community.
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What credit or debit cards does CNS Foundation accept online?
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You can donate directly online using our secure payment system.
Click to Donate
Only VISA, MasterCard, or American Express credit or debit cards are accepted. These include International cards branded as VISA, MasterCard and American Express.
We CANNOT accept Maestro, Discover or any other brand of card.
Or, you can mail your check to:
CNS Foundation
1223 Wilshire Blvd, #937
Santa Monica, CA 90403
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Is my credit or debit card information secure?
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This Web site secures your private information using a VeriSign SSL Certificate. Information exchanged with any address beginning with https is encrypted using SSL before transmission. Identity Verified CONVIO INC has been verified as the operator of the Web site located at secure2.convio.net owned by CNS Foundation. Official records confirm CONVIO INC as a valid business.
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Brain Repair
and Regeneration are Possible! |
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| CNS is a nonprofit research foundation improving the lives of children disabled by neurological disorders through research focused on brain repair and regeneration. |
| The Problem |
| Research for childhood neurological disorders is poorly supported, slowing development of laboratory discoveries into safe, effective treatments for children with neurological disorders. |
| The Solution |
Fund
high-quality research focused on brain repair and regeneration. |
Sponsor
meetings where physicians and scientists can work together |
Encourage
young scientists to pursue pediatric neurological research |
Advocate
increased funding for pediatric neurological research |
Educate
families about options for treating their children |
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