April 9, 2007

RE: MPS IVA (Morquio) Project

Dear ALL Morquio Families and Friends,

I hope that all Morquio families are going well.  I was in Japan from April 2 to 8 to discuss on Morquio Project with Japanese Morquio families, patient societies, and doctors.

On April 5, 2007, Japanese Morquio families invited me to visit Prime Minister’s Residence to ask for the promotion of Morquio Project to the Japanese government. We had a great Morquio family meeting after the petition. Seven Morquio families and eight patients as well as Japanese doctors and Japanese MPS Society members joined this event.

Mr. Shimomura, a deputy chief cabinet secretary of Japanese government, promised that the Japanese government would promote and strengthen the support for the development activities of new drugs for Morquio disease. The high-ranked officials at Ministry of Health, Labor and Welfare are ready to start to talk cooperatively with Morquio families, doctors, and the company on how to introduce ERT on Morquio disease and to organize the clinical program in Japan.

Moreover, Muconetwork (Osaka, Japan: President Mari Nakai) accepted the grant proposal (three years) of Dr. Adriana Montano: Enzyme replacement therapy by using amino acid oligonucleotides. Since Dr. Montano is quite promising researcher working with me over 12 years on Morquio Project, that grant will be quite helpful  for achievement of our research project as well as encouragement to Dr. Montano.   It will be tremendous contribution by Japanese patient society.

We really appreciate the formidable efforts of Morquio families and patient societies in Japan to contribute to Morquio Project.

Thanks again for your great interest and contribution on Morquio Project. We are very thrilled to meet Morquio families in the next event!
  

Tampa, FL (April 14: www.jacobrandallfoundation.com)

SF, CA (June 2: www.morquio.com, www.arianascure.com, www.annunciation.org)

 Join this meeting!

We have a detailed discussion with an individual family at Tampa.
The following issues were presented and discussed.
1. International Morquio A Registry
2. Educational CD for Morquio
3. Murine models for MPS IVA
4. ERT of MPS IVA and newly-designed bone targeting system
5. Time table for Morquio Project and clinical trial
6. Question and Answer

We are very pleased to meet as many as Morquio families through the meeting.  I am very happy to make a presentation of our Morquio Project to date and to discuss with each individual family. I enclosed the two meeting brochures here.

Most Sincerely,

Dr. Shunji Tomatsu  and
Dr. Adriana Montano
Department of Pediatrics, Saint Louis University,
Pediatric Research Institute
3662 Park Ave. St. Louis MO 63110-2512
Phone: +1-314-577-5623 ext. 6213
Fax: 314-577-5398
E-mail; tomatsus@slu.edu

Please kindly look at the following web sites to know the variety of activity by Morquio Foundations and families.

Address for Morquio Foundations:

The Carol Ann Foundation & International Morquio Organization
President Mary Smith
The International Morquio Organization
8164 W. Circulo De Los Morteros
Tuscon, Arizona 85743
Telephone: 520-744-2531
Fax 520-744-2535
http://www.morquio.com/
E-mail: mbs85705@yahoo.com

The Bennett Foundation,
President Steve Waters
714 Richmond Street
Brunswick, Georgia 31520
(912) 222-1363 or (912) 262-9525
http://www.thebennettfoundation.org/
E-mail: swaters@glynn.k12.ga.us

Jacob Randall Foundation for Morquio
President Renee Little
14716 Tudor Chase Drive
Tampa, FL 33626
Telephone: 813-731-8274
Website: www.jacobrandallfoundation.com
E-Mail:  rjl197@verizon.net

Ariana’s Cure Fund for Morquio
President George Kallas
San Francisco CA
Website: www.arianascure.com
E-Mail:  Arianascure@aol.com

Danette Baker Website for Morquio Group
Website: health.groups.yahoo.com/group/Morquio
http://www.geocities.com/hotsprings/villa/9405
E-Mail:  Morquio@yahoogroups.com

Annabelle Bozarth Website
Stephanie Bozarth
Website:  www.caringbridge.org
Click on "Visit a CaringBridge site "
(under the name
BELLE) Go to Journal
E-Mail:  stephbozarth@yahoo.com

Sarah Van Orden Website
Ruthann Van Orden
www.caringbridge.org/visit/sarahvanorden
E-Mail: r_vanorden@yahoo.com

Sota Isomoto Website (Japanese)
http://www1.ocn.ne.jp/~morquio/index2.html
E-mail: saori-fanfan.i@docomo.ne.jp

Please let me know if you have any own Morquio web site!!!