Support Groups2018-05-23T12:34:52+00:00

Support Groups

The following list contains links to third party web sites. Dravet Syndrome Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our families, a listing here should not be construed as an endorsement for any products or services they may provide. If you have a suggestion for a resource, please email us

A special thanks to Michelle Welborn, Pharm D, for providing the following information.

MWelborn Group, LLC Pharmaceutical Consulting

Intractable Childhood Epilepsy (ICE) Alliance

 

Stiripentol is not an FDA approved drug. For the last several years, US citizens have been able to obtain stiripentol by ordering directly from Biocodex, France OR by ordering through Caligor Pharmacy, NY via the FDA’s Personal Importation Policy (PIP)

FDA’s PIP is discretionary, meaning the FDA has the right to control the importation of a non-approved drug for personal use. This policy is meant to help people with life threatening illnesses obtain drugs when FDA approved drugs have failed. The FDA does not consider the PIP a “license” to import drugs for personal use (even for people with life threatening illnesses). However, the FDA will allow importation of investigational drugs for life threatening conditions if the criteria in the import policy are met in most cases.

There are now many patients with Dravet Syndrome on stiripentol in the United States, and the drug remains unapproved (investigational). Because stiripentol has been imported for most patients through the PIP, the FDA does not know exactly how many US citizens are on the drug and also does not have safety data on the use of an unapproved product in a fairly large group of patients. The FDA preferred way of obtaining a drug for investigational use is by the FDA Expanded Access IND process. The IND Expanded Access program allows physicians to request permission from the FDA to use an investigational drug in a patient with a severe or life threatening condition in which FDA-approved drugs have failed. Safety data is collected at regular intervals on all patients receiving an investigational drug via and IND and the FDA is alerted to any serious or life threatening adverse events. Also, the FDA is able to ascertain how many US citizens are using an investigational drug at any given time. The FDA’s ultimate goal for investigational drugs for life-threatening conditions is for the sponsor of the drug to submit the necessary data for FDA approval so the drug will be available to all patients with the disease. When growing numbers of patients with a rare disease such as Dravet Syndrome use an investigational drug for treatment, there is concern that once the clinical studies that are necessary for FDA approval begin, there will not be enough patients that haven’t used the drug to enroll in the studies. This may delay or prevent FDA approval. This website gives consumer information on Expanded Access INDs.

Considering all of the above, in 2013 the FDA mandated that all new patients who obtain stiripentol in the United States through Caligor Pharmacy must have an IND submitted to the FDA by the prescribing physician. New patients are considered those who had not been receiving a continued supply of stiripentol prior to December 2012. Patients who were prescribed stiripentol prior to December 2012 and who had received continual shipments of stiripentol from Caligor Pharmacy are “grandfathered” and will continue to be able to receive stiripentol from Caligor Pharmacy without an IND in place. Instructions on how the physician should submit the IND can be found at this link

If the physician has questions about the IND process, he or she should call FDA’s Center for Drug Evaluation and Research (CDER) Neurology division at 301-796-2250 and ask for the project manager that is handling stiripentol INDs. It is not appropriate for parents or caregivers to call this number to get information about the IND on the doctor’s behalf – the doctor or the doctor’s agent must communicate with the FDA. It is recommended that the doctor call prior to submitting the IND so that he or she has all the information necessary for the IND to go forward.

New patients whose parents or caregivers wish to import stiripentol directly from the manufacturer, Biocodex (France) through FDA’s Personal Importation Policy may order the drug without an IND in place.

Contact information for Biocodex, France

phone: +33 (0)1 41 24 30 00

email:  v.staller@biocodex.fr

Contact information for Caligor Pharmacy, NY

(212) 988-0590

email:  inquiries@caligorrx.com

Croatia (Dravet Sindrom Hrvatska)

France (Alliance Syndrome de Dravet)

Germany (Dravet Syndrom Eltern-Selbsthilfe)

Italy (Dravet Italia Onlus)

Italy (Gruppo Famiglie Dravet)

Netherlands (Stichting Dravetsyndrooom)

Romania (Dravet Romania)

Spain (La Fundación Síndrome de Dravet)

Sweden (Dravets Syndrome Association Sweden)

Switzerland (Swiss Dravet Syndrome Association)

UK (Dravet Syndrome UK)

COPING WITH GRIEF & LOSS

Losing someone you love or care about, particularly a child, is very painful. You may experience all kinds of difficult emotions and it may feel like the sadness you are experiencing will never go away. These are normal reactions to the loss of a loved one. Remember that there is no right or wrong way to grieve, but there are healthy ways to cope with the pain.

It is important that you take care of yourself and get support and/or professional help to work through the emotions you are feeling. Make certain your surviving children understand that you recognize their loss and grieving and that you love them. Open communication will help the entire family through the grieving process.

HELP WE CAN OFFER

When you lose a child, the pain is indescribable and the silence can be deafening. With the loss comes many questions and uncertainty about the future. Although there is no clear answer to these questions, we are here to help you through this journey of grief that can only be described as exhausting.

Everyone grieves differently, and there is no right or wrong way to grieve. Do whatever it is that you have to do to get through each day. Most importantly, be gentle with yourself and allow yourself to grieve.

My name is Jenny Tischer. I understand the grief that you are experiencing at this tragic time.  I lost my daughter in 2010 from complications due to Dravet Syndrome.  In the last few years, I began volunteering at our local Children’s Hospital with the bereavement department, reaching out to parents who recently suffered the loss of a child.  I am here to support you in any way that I can. You can email me at jenny@dravetfoundation.org for help and support. You can read my daughter’s story here.

Myself and others within DSF can help by:

  • Contacting families after a loss
  • Sending support materials
  • Offer supportive resources
  • Admittance to the Bereavement & Loss Support Group
  • Follow-up support

WAYS TO HELP A GRIEVING PARENT & FAMILY

  • Let your concern and caring show.
  • Be available to do whatever is needed, including just listen. Being avoided by others only adds to a grieving parent’s pain.
  • Tell parents you are sorry about what happened to their child and about their pain, but don’t say you know how they feel. Only other parents who have had a child die really know what that is like.
  • Let parents grieve in their own way and at their own pace. It is not helpful to tell them what they should feel or do.
  • Encourage parents to be patient with themselves and not to expect too much. This is not the time for “shoulds” or “ought to’s.”
  • Don’t try to fix parents’ pain. Reminding them that they still have other children or that they can have another child suggests the child who died is replaceable and not unique.
  • Use the child’s name and share your special memories of the child with his or her parents. Allow them to talk about their child as much and as often as they want to. They may cry but they also will tell you that it makes them happy to talk about their child.
  • Remember birthdays, anniversaries and other special days. Grieving parents want to know their child has not been forgotten.
  • Give special attention to the child’s brothers and sisters, not only immediately following the death, but also in the months to come. They also are grieving and need support and understanding.
Facebook Bereavement Support Group

Tissue Donation

The vision of Dravet Syndrome Foundation is to help researchers find ways to one day prevent or cure Dravet syndrome and related ion channel epilepsies so that future generations do not have to face the devastation of these diseases.

Dravet Syndrome Foundation supports Dr. Alica Goldman and her colleagues at the Department of Neurology at Baylor College of Medicine in their establishment of a seizure disorder tissue bank, the SUDEP Tissue Donation Program (STOP SUDEP). This project is funded by The National Institutes of Health (NIH)/The National Institute for Neurological Disorders and Strokes (NINDS). Investigators are collecting blood and/or tissue samples from individuals who have passed away as a result of a seizure disorder. We ask that you consider pre-registering for tissue donation once a clinical diagnosis has been made.

We understand that tissue donation occurs at a particularly emotional time for loved ones and that it is a personal and difficult decision that will not be right for everyone. By making this generous donation, you improve the chances of finding a cure and better treatment options for these diseases. If you or your loved ones have questions about the donation process, please contact Dr. Alica Goldman.

Below are links to brief videos that help explain the tissue donation process:

Tissue donation is a very special gift, but is one about which you may have more questions about. We seek to address some of these questions here.

Learn more about SUDEP Registries and Tissue Banks