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Category: Front Page

18
Nov 15

Little Hercules Foundation advocates for Right to Try Bill in Ohio

Today, Kelly Maynard provided proponent testimony on HB 290, Ohio Right to Try Bill.  This bill, if enacted into law, gives patients suffering from terminal illnesses and their doctors a chance to utilize unapproved drugs and/or treatments when no other options exist.  This bill protects doctors from sanctions or penalties when attempting to utilize all therapeutic resources to save a patient’s life – even those that are still in the clinical trial process and not yet approved by the FDA.  Read my testimony HERE.

26
Aug 15

Bewitched Ball

October 23, 2015 – October 23, 2015

5462 N. Center Street

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Description:

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Join us for the first annual Bewitched Ball!  A night of good food, entertainment, and playing dress-up!  There will be a costume contest with a cash prize, awesome auction items, and raffle prizes.  Comedienne Leslie Battle will be our host for the evening.  And lots of dancing, so dust off your Thriller moves.  Adults only please.

This event is brought to you by:

_n2-email_Bobby-Wright

Sponsors:  Please choose your sponsorship level from the pricing dropdown menu and complete your registration.  You can list your table guests as additional attendees (maximum 8 guests per table).  You can pay for your sponsorship package here as well.  Don’t forget to scan and email your completed sponsor form to kelly@littleherculesfoundation.org.  If you are interested in the Ghoul level (donation to auction/raffle), please email the form directly (no registration required).  Click here to download a sponsorship packet.

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24
Jun 15

Exciting new data on HT-100!

Recently, Akashi Rx published data from their Phase 1b/2a trial of HT-100.  HT-100, also known as halofuginone, is a powerful anti-fibrotic/anti-inflammatory that will help ALL boys with Duchenne, regardless of mutation.  The Little Hercules Foundation is proud to be a financial supporter of this promising therapy.  Read the press release here!

18
May 15

Regional Roundtable for Clinical Trials

August 8, 2015 – August 8, 2015

5985 Cara Road

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Description:

LHF name stackedJett Foundation

New Regional Research Roundtables Will Explain Ins and Outs of Clinical Trials

There are currently approximately 62 ongoing clinical trials for Duchenne listed on clinicaltrials.gov, and 68 listed as completed. Several pharmaceutical companies have therapeutics in the approval process with possible approvals for at least 3 drugs in 2016! It is an exciting time for Duchenne, but it can also be confusing for those who have to make important decisions for their loved ones.

The Jett Foundation is partnering with the Little Hercules Foundation, as well as clinicians and other experts around the United States in a series of Regional Roundtable clinical trial discussions. These events will help to inform and create discussion around clinical trial options both locally and worldwide currently underway or recently completed. The events serve a dual purpose for patient participants to receive information from sponsors and for sponsors to receive input from patient participants on what is important to them in clinical trial settings.

There is no cost for this event and lunch will be provided.  Children are welcome and supervision will be provided.  Just please make sure you indicate how many you will bring and their ages on your registration.

In order to assist us with providing the most pertinent information to the group, please complete the following confidential survey:  https://www.surveymonkey.com/s/RSPZMTB.

Register

09
Apr 15

Jackson is first boy with Duchenne to receive Follistatin

On Monday, April 6, 2015, our very own Jackson was the first of six boys in the world to receive an experimental therapy called Follistatin.  Developed by a team led by Dr. Jerry Mendell from Nationwide Children’s Hospital here in Columbus, Ohio, Follistatin in a non-mutation specific, gene therapy that blocks myostatin, a negative growth factor in muscle tissue.  In previous trials, most patients improved their ability to walk, gained muscle strength, and experienced a reduction in fibrosis and inflammation so often present with muscle disease.  The Duchenne arm of the Follistatin trial was funded by the Duchenne Alliance, of which Little Hercules Foundation is a member.  This promising therapy is a great example of how foundations can partner directly with the research community to move promising therapies through the pipeline FASTER! We will post updates as to Jackson’s progress.

Jack pre op pic

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